Written by: Afsaneh Morteza
Edited by: Quinton Lowe
It was an unusually busy day for me. People were calling back-to-back and my morning was filled with patients. I was in the middle of a call with a trial sponsor and had to run to the clinic to see a patient when I received a call from an unknown number. It was an older man calling on behalf of his wife. They did not know who else to contact and had received my number from the clinic nurse. They had an appointment with their oncologist yesterday here in Texas about her cancer management andwere already on the drive back to their house in another state, when they received an alert for scheduled imaging back in Texas that same day. Frustrated, he was calling to double check if there were any other tests they needed to do urgently for our trial eligibility, because they did not want to be called again to come back at the last minute.
I had spoken with his wife on the phone once before, three months ago, to get her consent regarding testing her tumor’s tissue for a target protein that would qualify her for the clinical trial. We had gotten a tumor tissue sample from her metastatic liver site four weeks ago for screening, in which she tested positive by the hospital lab for the target protein. But we were still waiting for the official result from the trial sponsor company. If the result from them was negative, she would be ineligible for the clinical trial, and the next step would be hospice. In the meantime, the oncologist wanted to proceed with further imaging in case she was approved for the clinical trial, enrollment steps were already being taken. To me the oncologist was jumping the gun. I was juggling too many things at the moment to explain all the machinations, so I just told them “Trust me, you do not need to return to Texas right now. Make it home safely, and I will call you later to explain all the details.”
A few hours later, when I finally had a quiet moment, I called them back to continue the conversation. I explained to the husband that it will be two more weeks before we receive a result from the trial sponsor. If the trial sponsor approves them for clinical trials, they can return to Texas and do the necessary imaging and tests all at once. They were relieved to know they didn’t have to return immediately and were very thankful someone had finally called them back to answer their questions.
A week later the trial sponsor called me to say they were unable to evaluate the tissue sample. There were two options for the patient. She could agree to another biopsy, which would involve surgery, but would allow us to retest for the target protein. Alternatively, we would have to screen-fail her, which would exclude her from the clinical trial and refer her to hospice. I informed the oncologist of this update, and she asked me to discuss the situation with the patient.
It would be my very first time talking about hospice with a patient. When I was a physician overseas, I sawmany patients who were terminal, but where I’m from, hospice isn’t a thing; instead we would continue to sell these patients hope, which was difficult. But this conversation about hospice was even more difficult. I felt very limited under the coordinator title with what I could say. When I had a calm moment in my schedule, I made the call. The same anxious voice of her husband answered. I could hear her trying to speak through him in the background, “Ask her this… ask her that”. I explained to them the new findings of the liver biopsy, and the options for moving forward. I did not mention anything about hospice, and then it came up. She grabbed the phone from her husband, “If I say I don’t want another biopsy, that means hospice, right?”. I couldn’t get myself to say “Yes”, and I couldn’t get myself to say “No,” because then I’d feel like I was selling her a false hope. Before I could say anything, she broke the silence by asking if she could call me back later.
Two hours later she called back, her voice was shaking as she asked, “What would you do if you were in our shoes?”. Again, I froze. I wasn’t her doctor, I wasn’t a nurse, I was just a coordinator. She continued “You have been an amazing coordinator, you’ve answered all our questions, and listened to our complaints, but I am so frustrated”. She hadn’t received any treatment for three months and was fearful it meant hospice. She had heard there are options with phase 1 trials and wished to be enrolled in them. She also asked about switching back to her old meds. She was reaching for any option that wasn’t hospice.
I thought to myself she does not seem to understand how cancer treatment works. When her cancer grows onone therapy, it means that therapy is ineffective. And she has tried all available therapies. Now she’s been referred to clinical trials, but no one on the team has discussed phase 1 trials with me. I did not want her to sense my uncertainty, so I just continued to listen and try to understand her state of mind.
“It is not on you,” she told me. “You have been doing a phenomenal job, but all this waiting, first for the tissue biopsy result, and now knowing it has been useless, makes me very angry. Why does it take so long and who is responsible for it? I haven’t received any treatment for three months. Why can’t they just give me something?” I assured her that it’s okay to be frustrated, and that I was a safe place to vent that frustration.
I asked if she had any physical pain. She said she didn’t have any physical pain, and that’s the irony of it. Physically she feels fine. She has been camping and hiking and overall feels great. It’s the idea of having aggressive cancer and not receiving treatment that’s been hard for her.
I asked her if waiting to hear about the clinical trials, and the uncertainty of the enrollment process, has been hard for her. She said “That’s it exactly! I don’t know what will happen and it feels as if my life is dependent on one test or another. I have been waiting to enroll in this trial and can’t stop thinking about what would happen if I can’t. It’s the waiting that’s killing me, and it’s become more of a mind game than anything else.”
She then burst into tears… I could understand where she was coming from, it was a hard place in life to be. Her husband took the phone and tried to calm her down. He went back asking about eligibility for the phase 1 trials.
I felt like I shouldn’t share personal information with them, I didn’t want to make this conversation about me. I’ve never been in a situation like hers, but I’ve thought about my own mortality, and I’ve been confronted with persistent uncertainty, so I could understand aspects of their pain. It took all my courage, but finally I said “I understand the waiting game, it’s unbearable, it can drive you crazy. I studied medicine overseas and came to the United States to become a great doctor, it is my dream. For eleven years I’ve applied for residency in September, and then the following March, I get the news that I have not matched to a program. I postponed marriage, postponed having a family, limited my life with friends, and even rejected jobs thinking I couldn’tcommit to them until I got my medical license.
In the first few years, I cried when I got rejection letters. But then I thought, maybe taking a job related to my field would help me to get a residency. I took a break from applying for a year, but the subsequent rejections were still painful. I eventually opened my eyes to accept the current reality of my life as a clinical research coordinator, as limited as it feels to me. Now I see the value in what I do and can forgive the past ten years of living my life chasing the dream, although I would be lying if I said I don’t daydream about what my life would be like if I were accepted for residency. And I proved to myself how long I was willing to wait for an opportunity. No one has ever said how long you’re supposed to wait to live your dream, and maybe I will never get anacceptance letter, but I’m still willing to wait, because there will always be hope in my heart”.
The patient was silent for a while, and I think she had even stopped crying. Eventually I heard her voice on the other end, “What you’ve been through sounds awful, maybe even worse than what I’m dealing with!” We both laughed, it was a nice way to break the tension. She said, “I don’t know if I mentioned it before, but I have grandchildren, and I’d really like to stay alive for them”. She and her husband made it clear to me that no one else had really talked with them about what they’d been going through, no one else had expressed such sympathy for their situation. Her husband ended the conversation by saying “You will be an amazing doctor one day, you’ve done so much by just listening and talking to us in a way no one else has.”
They decided to do another biopsy and I sent a request that day. By the end of the week, the treating physician informed me that the location of her tumor is complicated and neither surgery nor biopsy are possible. She was then referred to a different phase 1 clinical trial. A few hours later, I received a text message from her, sharing her decision with me to do the clinical trial, and thanking me for being on the human side of the team. I never met her or her husband in person, but the conversation we had touched me. It gave me a better perspective of who I am and how valuable I am to my patients. I faced my greatest fear by allowing someone else to see my vulnerability and learn about my failures. By sharing my story with a patient who trusted me, I challenged an old belief. I had thought that if she knew I had made repeated mistakes and experienced failures, I would lose her trust. Instead, she continued to trust me, and that was my victory. I have always been healthy and haven’t experienced physical pain or fear of death, but I feel the death of my identity by not practicing medicine. Not meeting professional criteria in the medical community such as a class grade, year of graduation, or a failed test, is frowned upon. These experiences, for me, feel very similar to what my patient was going through, the Waiting Game.
I’ve thought about her often and had hoped to meet her in person. I don’t know why, but maybe it was for a sense of closure. I think the healer and the patient can often share the same pain in different parts of life. Maybe you can only meet people as deep as you have ever met yourself.
Short Bio
Afsaneh Morteza, MD, MPH, is a Research Coordinator in the Division of Cancer Medicine at The University of Texas MD Anderson Cancer Center. She earned her dual MD/MPH degree from Tehran University of Medical Sciences, where she conducted extensive research focused on diabetes and chronic inflammation. Currently, Afsaneh is working toward obtaining her medical license to practice as a physician in the United States. Outside of her clinical and research pursuits, she is an avid writer, swimmer, and hiker who enjoys solving mathematical problems. She loves painting and currently focuses her artwork on transmitting and evoking deep human emotions.