Chapters 3 and 4, the trial, working

 Chapter 3: The trial

              Later that week we met to discuss options. There was a clinical trial called Agile, which would test regorafenib (a multi-tyrosine-kinase inhibitor) as maintenance therapy in order to slow or prevent further cancer growth. The way it was supposed to work was inhibit several growth receptors on cells in order to stop the cascade of growth signals. It was a good theory in general. Learning that I had been paired with the experimental therapy—regorafiniib-was one of the last happiest moments I had. I remember being so full of hope. I thought to myself how this was something new, how this is something that would work. Maybe we attack this and it just doesn’t grow back. My life is handed back to me, perhaps a little more rough around the edges. I would take the medicine in cycles of 4 weeks. 3 weeks taking, one week off, and we would monitor regularly,  Beginning regorafenib was difficult. Shortly after the 1^st week I began to feel consistently flu-like. I thought that it must be a good thing—a sign that the medicine were working. Eventually at the next clinical appointment I got prescribed Ritalin for chemo and cancer associated fatigue, and it did help pull me out of the medicine slump. For a while I guess I can say things were somewhat normal. It was lovely, everything I wanted.

              Perhaps the worst part of the clinical trial, although it gave access to experimental therapy for cheap, was feeling more like data and less human. Every visit I would be poked and proded for various laboratory data. I was required to take the regorafenib at a certain time in order to get pharmacokinetic data on how it was metabolized for the research study. Then in the clinic room I would be given a large collection of standardized “objective” surveys to see how I was tolerating the whole experience. They asked questions about my mood, my neurological capabilities, my energy level, any side effects, how tolerable I thought they were, and then asked me to rate my health overall from a scale of about 0-100. I would turn in these surveys so they could become part of a giant data set where they could argue how well or poorly-tolerated regorafenib was. It didn’t matter if I filled out on the forms that I was feeling more anxious or depressed—rightlfully so—it only led to more forms.

              After I tolerated the drug for a while, I was curious about additional therapies. If I were doing so well, why not add additional thrapies to try and get at this cancer? But of course, to add additional therpies would make it difficult to see if there is any true effect from the drug. The data was the most important. And so I didn’t start anything additional. However, a few weeks later things changed. My white count had gotten too low and so we took a break from the regorafenib. I felt somewhat defeated, but was confident that the drug was working and this would just be a little bump in the road. But it was not.

Chapter 4: Working

A little while after pausing on regorafenib, I had a repeat brain MRI to see progress. The last several MRIs had been amazing. They showed great healing of radiation damage, and clean borders around the resection cavity. I had become accustomed to the good news every month or so telling me that everything was going well and I could continue as I was. Obviously something had changed, June June 2021. But before we get into that, I want to talk about what else was going on.

              Even though my life was consumed by cancer, all my waking thoughts, my relationships, and the like, but I wanted to continue as normally as I could. And so after working closely with the University of Utah Internal Medicine Residency program I arranged to be able to continue working. At first I was back only in an outpatient capacity. And that was fine, I somewhat enjoyed the slow pace of outpatient. The whole cancer experience had changed my lens as a physician as well, and I was excited to see how I could maybe use that to help people.

              One of the first things I did was incorporate end-of-life discussions whenever there was extra time in the visit and document them well. I wanted people to be prepared before something terrible happened, not stuck in the same situation I was. Questions like, “how do you imagine your final days? Who is with you? What are you able to do? Where are you?” We focus so much on living that we forget dying is a sort of journey itself. And I believe that the way we choose to die creates the contextual framework from which life’s meaning is derived.

              Then I returned to inpatient rotations with plenty of people actively dying in the hospital. I was incredibly grateful for my program for helping me to continue my dream of being a good and caring doctor. The hospital was stressful and tiring, but certainly better than being off work. It certainly had its awkward moments however. Attending physicians would ask me what my big plans were for residency and beyond. What did I like, what did I want to do? I didn’t know how to answer these questions. I would say “I’m focusing on graduating right now.” It was the most honest I could be without saying too much. It was an awakward situation though. I wanted everyone to know because I thought it would make things logistically easier. At the same time I didn’t want anyone to know because I wanted to be treated normally. But most of all, what I didn’t appreciate was others taking that from me. I remember as I was rotating in the cardiovascular ICU, the fellow I was working with believed it was his job to inform everyone on the team what was happening with me if there were a question based on my doggy answers to questions about the future. It was incredibly violating. I couldn’t believe that someone who had spent so much time in the medical field would think that it were OK to do that. It was then I vowed to never appropriate or take a patient’s voice without their consent or knowledge.  Autonomy and dignity are difficult to come by in the hospital, but for patients they can be one of the greatests gifts. Anything to say “you’re suffering, but you are still a person deserving of respect.” I wanted to patients I was taking care of to know that.

              Then I got a cancer patient. This felt like my big break. I thought, who could posibiliy be better suited to take care of this patient? Of course I didn’t share my own story with her. They were a wonderful family. Part of me wishes I had shared, but alas. She was a woman with terrible ovarian cancer that had spread all throughout her abdomen. She required an IV for all her nutrition, which had become infected. She was admitted for an infection and low white count. Although when I saw the white count I had to chuckle a little bit because it was higher than my white count tended to be at. She was started on strong antibioitics, we prepared to get her more food. I made sure that she had an ample pain and comfort plan. I thought that this must be the last place she wanted to be, and so anything I could do to alleviate her symptoms—pain, insomnia, anxiety, etc.—would be noble. I called her oncologist. They had just started a new treatment plan, but it wasn’t working and causing more harm than good. They were planning on stopping. There was talk about switching to comfort care. With oncology I got palliative care on board as well. We sat down with her and her husband and the rest of the team members and had a long goals of care discussion. I was happy to see that the other doctors were frank in their assessments. There was no long-term strategy. Would she want death with dignity or a drawn-out battle. It was a hard conversation to be a part of. I couldn’t help but think of myself during it. What was I doing? I knew the prognosis was poor for me. Should I be giving up earlier? When should I give up? The family gets set up with home-hospice so they have all the comfort they will need at home. I am happy for them. I thank the patient for her time, and tell her how honored I felt to be part of her care team.

              I was on call that night. Code blue. The patient in 314 with the terrible heart arrested. His heart no longer pumped blood. We started chest compressions. The anesthesiologist came and put a tube in to help him breathe. With the thoughts of the prior conversation on my mind, I viscerally recall the fleshy recoil of his chest as we pounded away. We get family on the phone. They are on their way. He regains a pulse and consciousness. He looks bad, beat up, tired. His eyes are roving from side to side—likely a brain injury from the heart attack. He’s stable for a little while, then he arrests again. Everything is still set up from last time. The family is in the room now. We have conversations with them during the arrest about code status. Is this really what the patient would want? What anyone would want? Eventually there was a decision to withdraw care due to futility. We cleaned up the patient for the family and removed all the monitors and wires. I filled out the death paperwork and talked to the family about an autopsy. They refused. I felt an earie sense of relief—it was all over, I wouldn’t be woken again for this man coding.

              After filling out the death paperwork, I sat at a nearby computer just thinking. I had too much adrenaline. I couldn’t sleep. Then I sat there and thought about myself. If I suddenly had a heart attack right then. Would it be worth it to bring me back? Would that trauma lead to meaningful results later? If anything a heart attack could be a blessing saving me from a long and agonizing death. I thought about sending my neuro-oncologist a message that night to tell him that I wanted to be do-not-resuscitate.  But what of my family and friends? Wouldn’t they want to be able to see me one more time, breathing, if possible? And if I was thinking about DNR and dying passively, why not just make a plan here and now for it all? The same questions, where would I be? Who would be there? What would I do? I knew that I didn’t want to die in a hospital. I wanted to be able to say thank you and goodbye.

Update: did not mean to post that last part today. Will come with more later this week. Sorry for the confusion. Thank you for reading.