Chapters 5 and 6: "A bump in the road," "The last clinical trial"

 

Chapter 5: A bump in the road

In June 2021 the most recent MRI sshows new growth. What was once nearly perfectly clean, now shows a ping-pong sized nodule in the area of the resection cavity. Things were not working. What’s worse, up in the white matter of the parietal lobe—associated with sensation and coordination—there was some new cancer smutz. Not only was it back, it had grown, it had spread. What are the next steps? I want it out as soon as possible? What is our next treatment? I meat with my neurooncologist. We plan to try and get me into a new clinical trial that I can fly back and forth from. Preferably somewhere on the west coast so that I can stay with family during the journeys. I tell almost no one what is going on because I want to continue to live my semi-normal life. We arrange to check with a number of institutions. UCLA, UCSF, UW, Stanford, MD Anderson, Cedars Sinai. We forgoe surgery because there may be a surgical element to one of these trials. In the meantime we stop the regorafenib. My hope. Now I am on no therapy. My neurooncologist reaches out to a number of doctors at these programs, yet I still have to do a fair amount of cold-calling in order to set up consultation appointments. I speak first with UCSF. They don’t have anything currently, but they have a vaccine trial with the polio vaccine opening up in about a month. That’s OK, I could wait. Cedars sinai has nothing. UCLA gets back to me. They have a trial available. They think I would probably meet criteria for it. The only set-back is that currently my tumor lesion is too small for the catheter insertion procedure. But it’s hope, and it’s progress. I feel like there’s something here. I arrange with My neurooncologist to get a repeat MRI in a few weeks to look for growth that might qualify me for the trial. In the meantime there’s a vaccine trial at Minnesota which could be promising and I could qualify for. And all the while I’ve set up to later consult with MD Anderson in Houston.

              We get the scan. It doesn’t matter. Before the results UCLA calls me. They tell me that even with the tumor size they only have limited space in their “vaccine suite,” which they need in order to administer the tumor vaccine, and that there is a long wait line. They tell me I likely won’t qualify even if my tumor size is enough. I ask them to keep me in consideration, but we keep looking.

 It’s about 9pm on a Thursday night. My phone rings, it’s an 801 number. I believe it must be the cancer hospital. Dr. Mendez is on the other line. He wants to talk about my most recent MRI. He asks me if I’ve seen it. I haven’t even though I have access through the University. He tells me he’s worried. There is an enormous amount of new growth. Most of the right side of my head is occupied with an explosion of tumor. It fills my occipital lobe-vision, my parietal, and parts of my temporal (which is involved with processing of perceptions and emotions and other important pseudo-abstractions. What’s worse, there’s a new ball of tumor in my right frontal lobe. The frontal lobes are what we consider the core of personality and personhood. I feel violated. The pressure is too much for my brain, I open the images while Dr. Mendez is on the phone. The mass is pushing my whole brain into the left side of my skull. What’s worse, I have a beginning of an uncal herniation, where the brain stem is pushed into a narrow compressed space, which can rapidly be fatal and stop respirations. I am asked to not eat for tomorrow. I suspect surgery. I would need it to live. How do I have no symptoms? I’m afraid to sleep. What if I don’t wake up? And if all this happened so fast? Was there any hope of ever getting any of it under control again? I reach out to family and friends so they know what’s going on. I drink a few beers and I try to sleep.

              At the clinic appointment we arrange for surgery. Dr. Mendez does not want to start any of the trials, despite one available at Minnesota, for fear that the inflammatory effects would cause more harm given the current pressure. I get the surgery. I feel relieved. I’m pulled from work—it’s devastating. People start to visit. My parents come. After surgery we have a clinic appointment to discuss next steps. That’s when I’m told I won’t qualify for UCSF any longer because there are too many lesions on my brain MRI. We think about flying down to MD Anderson to explore a trial that they think I may qualify for down there, vaccine-based. I want a trial because it brings hope. Like at the end of a trial, you can imagine yourself as one of the major outliers who beat the odds somehow. But the UCSF trial is run by Duke, and they are stringent with inclusion criteria because they want good data that supports their research. Again, the data becomes more important that the patient. I propose an alternative plan. Radiation had helped the last time. We repeat radiation given all the new areas of growth, maybe tie in surgery, and then add in the checkpoint-inhibitor called pembrolizumab. Pembrolizumab effectively takes the breaks off of the immune system so that It can attack the cancer cells. I had seen it in solid organ oncology clinics several times before as a sort of “last resort.” I thought that the radiation could expose antigens or “signs” on the tumor cells that my immune system could recognize as foreign and attack. Maybe between the two, my body would learn to fight better against this cancer. I was nervous however, it felt as though I were directing my own care. I wasn’t sure if this is what I should be doing? Was there another option that I was missing? It didn’t seem like it. We decided to keep the MD Anderson appointment as well just to talk. It was time for the more difficult conversation. My Parents and friends need to hear that I don’t have a lot of time left. And there will be a time when I won’t be able to care for myself. We try to plan ahead. I plan to stay in salt lake city with people visiting for the next few months at least. I want to maintain my independence as long as possible, and I’m not ready to say goodbye to the people I’ve grown to love here. Eventually I’ll move back to Seattle and hopefully live with my brother and his fiancé with continuing cancer care at UW. We talk about the future too. Washington is a right-to-die state. I want to have a plan for physician assisted suicide in case I am no longer myself, or can no longer function in a meaningful way. I don’t want to die as someone other than me.

              We decide to pursue pembrolizumab and radiation and start to get things set up. In the meantime we buy tickets to Houston for an appointment at MD Anderson the following Monday. We decide that Sarah will fly with me as a “medical chaperone,” and it helps that her sister lives in Houston. It’s at first stressful. My parents can’t decide who should fly with me. They ask me who I want to fly. They ask me how I feel about the plan. They ask me what I think is going to happen, what I hope to happen? They ask me if they think the old medicine might have been working a little bit. “I don’t know.” It’s too many question. I don’t want to make any more decisions. I want to be swept away, for someone to tell me what’s right and what I should be doing.

              My parents drop sarah and I off at the airport that Monday. We go up to the delta front desk and ask to sit together because of my recent surgery and Sarah being my medical chaperone. They’re kind and arrange for us. We watch some terrible rom-coms together on the flight. It feels good to get away, it feels like something is happening, like maybe everything is going to be alright in the end.

Chapter 6: The last clinical trial

The clinic appointment at MD Anderson starts off well. The neurooncologist is impressed with my lack of real neurological deficits. She believes that I would most likely qualify for their vaccine trial, which involves using an arterial catheter to inject vaccine right around the location of the tumor. The vaccine is designed to specifically infect and destroy tumor cells, and in the process should create an immune response to help the body fight. Sarah asked incredibly poignant questions. We asked about our current strategy, which she thought was good because “radiation is one of the most effective therapies we have,” but she did say she would opt for the trial as well if given the chance. I was set, if approved I would pursue this trial. I was already arranging for people to help me out in Houston for flying back and forth. I messaged Dr. Mendez, I let my parents know. The only hiccup was that the neurosurgeon running the trial was out, and he needed to review my images to see if he thought he could properly access the tumor. Things seemed hopeful. Would this be my miracle treatment? Sarah and I left in high spirits. Afterwards we went to tour NASA.

              I was grateful to see NASA. Growing up I had always loved space and star trek. It seemed to represent the pinnacle of human achievement and capacity. We got a tour for the rocket yard. The Saturn 5 rocket was enormous. Seeing it in person left me with a sense of wonder. We took a look at the space shuttle. I touched some of the ceramic heat shield panels. I figure, if we can get to space, maybe I can get through this? Growing up my family watched a lot of Star Trek. I loved it. It was campy but hopeful. It painted a future that I wanted to believe in, and that I wanted to be a part of. It certainly lit a spark of curiosity and hope and scientific interest from an early age. Even in elementary school I was checking out books on how light works rather than novels. I wanted to know how to world and the universe worked. It was the begning of the greatest lie I would ever tell myself—that with enough knowledge all problems were soluble. And here I was in the same spot. If I knew enough, and if I had enough resources, there was no way this cancer wasn’t solvable, right? I hadn’t done anything wrong in life, this was not some moral smite from a higher being. I had been vegetarian, I had exercised, I avoided most vices. I should be spared. It wasn’t fair. Then it was time to get to the airport.

              Sarah and I get to the gate. This time the staff is less kind about our situation and refuse to seat us together. We board anyway, but were able to swap with a nice family with the help of a flight attendant. We watch “An American Pickle,” a corky comedy I very much enjoyed, and set off for a relatively uneventful flight.

              When we land I see that I have a new message from MD Anderson. I open it. Apparently the neurooncologist got into contact with the neurosurgeon. He states that due to the location and extent of disease, he does not think that he can get to the tumor. I won’t qualify for the trial. I’m devastated. I’m shocked. I ask if I can be kept in continued consideration in case something changes. I open my own images, I remember reading vasculature on brain MRI in med school. As far as I can work out, the tumor is a straight shot from the middle cerebral artery, which should be rather simple to access. I’m livid. If I see this, how could the neurosurgeon not? Another rejection. What is the purpose of these trials? Are they to help people? Are they to advance careers?I feel like I’m in a sea of misplaced morality and ethics. If these treatments actually worked, what would it matter if you had to find the perfect patient for each one prior to starting? I told my parents the bad news. They were unhappy. I was so angry at the clinical trial world. I felt utterly betrayed. Moreover, why were these trials attempting to be placebo controlled? Was any person signing up for a trial because they thought the standard of care was going to work for them? Certainly not. And should we not have enough old data to make up for the gaps, so to give individuals the best chance they can? On top of that, I spent so much time and resources just to try and get into one of these trials. What was someone to do if they were poor or homeless or otherwise without resources? It didn’t feel like an industry designed to help people.

We got back. My parents helped me with my work and disability paperwork in order to try and arrange the more logistically aspects of the situation. This was very helpful. I was grateful. The program was understanding and accommodating. What I wanted most, however, was a door, that “if these things happen” then I can return to work and be a full-fledged doctor once again.