When the can doesn’t land as far as you hoped – another recurrence

Introduction:

Living with brain cancer I always told people it was a matter of “When” not “If” my tumor would start growing again. It was one of the few certainties in a journey of uncertainty. During my recurrence in 2014, my tumor extended into the motor strip making a complete resection impossible. I had to grapple with the fact that the goal of treatment would never be curative, but always an attempt to “kick the can down the road.” How far that can would land, how big of an impact it would make, was unknown.

On January 25th, 2015, I wrote a blog post reflecting on this so-called “cancer can”:

“One of the things I hate most about having to do chemo and radiation is that it feels like I am pushing the problem down the road instead of dealing with it head on. I am lucky that currently, my tumor is slow growing, and that I have a good shot that this therapy will buy me another 5, 10, 15, maybe even 20 years without a recurrence. With brain tumors though, particularly my type, they usually almost always recur. Years later I will likely have to deal with this all over again, and my best shot is that there will be medical advancements that can more directly treat my type of tumor. What scares me though is that there may not be those advancements, and at that time, I may have to do surgery simply to prevent a worse outcome, meaning I would likely lose movement on my right side. We cannot know the future though, and it is that uncertainty that makes this so difficult. Instead of going all in right now, I am essentially hoping I’ll be dealt an ace later down the road. But who knows? In the 11 years since my surgery there have been significant medical advancements. The likelihood that there will be even more by the time I have to do this again is pretty high.”

I really thought I’d be dealt an ace. I really thought the “cancer can” wouldn’t land for another 10, maybe even 20 years down the road. I thought I had time…to go to medical school, have a career, create foundations for my life, meet someone I love, start a family. In my future forecast I didn’t account for the scenario that the “can” would land now…just two and a half years since finishing my last round of chemotherapy. In some ways this time is different, there are more treatment options, but in other ways it is still another attempt to kick the can.

If you’d like to go straight to the information regarding my diagnosis of a recurrence, you can scroll down to the last section of this post. Otherwise, the following is what happened in the lead up to my diagnosis over the past few months.

Christmas Eve Seizure:

Let me take a step back for a second. I’ve only known about this new recurrence for a month, which is why many of you are probably finding out about it for the first time. This story, however, starts a few months ago on Christmas Eve when I had my first seizure since February 2015. Instead of rewriting everything again, below is something I wrote while lying in the Emergency Department at 2:00am:

“Tightening, convulsing…numb. As I continue to lose control of my flailing arm, my mind focuses on a different yet more salient loss of control: my fate. Right when I start moving forward with my life (medical school, putting roots in California, plans to travel abroad), my tumor slaps me in the face with a seizure, painfully reminding me of its presence. Reminding me of my lack of control, of life’s fragility, and the persistent uncertainty of my ever-changing new normal.

Surrounded by family while the seizure happened, I could see in everyone’s eyes the same thoughts, the same scenarios playing out in our heads; unspoken. What if it was just a breakthrough seizure, what if the tumor has returned. It’s easy to let the mind wander, but it’s not productive. Without information, going through the spinning wheel of what-ifs is an exhausting, emotionally draining exercise.

“Go to the ED ASAP,” my doctor said in his midnight email. In the ED my worlds collided like identity whiplash. As I walk to my room, I see the ambulance bay where as an EMT I brought in patients who needed care. I lay on the exam bed, and now I am a patient getting my blood drawn. The doctor walks in and he begins his physical exam, testing my cranial nerves, maneuvers I performed just two weeks prior as part of my last medical school exam for the fall semester. Patient, provider, student, patient, provider, patient, student, patient, patient, patient…. patient. My mind spins, unsure of what role I am in, what role I should be in, what role I want to be in.

The reality is that I have been a patient most of my life. Not just a patient, but a cancer patient. An identity that generates sympathy from the nurses and providers in the ED, that speeds up the time it takes to get a bed or an MRI scan. I’ve been a cancer patient since I was 12. After years of treatment and recovery, this part of my identity faded into the background, but then life presented me with a harsh reminder of this identity, a recurrence in 2014. I recently began to put some distance to my patient life, ironically through medical school, with space finally opening to form new identities, new opportunities. Yet one small seizure in the arm carries such a heavy emotional blow…I will always be a patient.

So, I wait for my MRI in the middle of the morning. And then I must wait for the results. Either it was just a breakthrough seizure, and I go on with my life and continue my studies; yet now with a searing reminder that the tumor looms in the background. Or, the scan shows something we don’t want to see. And then what. What is my identity? What identities do I get to hold onto and which ones do I have to let go…temporarily…permanently?

Life is about adaptation. It’s not about the hand we are dealt, but how we handle that hand, how we play our hand, and how we let others in (…our family and friends) to lend us a hand. So regardless of what this scan shows, there is one certainty in this ocean of uncertainties. I will move forward guided by my values, surrounded by the people I care for most.”

Christmas Day:

I went to sleep for a few hours after writing the above reflection. I woke up on Christmas Day to a young ED resident, slightly rambling that something showed up on the MRI, but they weren’t sure what. Confused, I asked how they were not sure? Was it the tumor growing again? He didn’t know, said the physician at Dana Farber would give me a call later in the afternoon, and quickly left the room. My Mom, Mark, and I looked at each other a bit bewildered, but gathered our things and were happy to leave the ED after an all-night stay.

While at a Walgreens pharmacy searching for Vimpat, a seizure medication my doctors were adding to my current regiment, I got a call from the Dana Farber doctor. Exhausted after being awake most of the night, I tried my best to concentrate on what she was saying. She sympathized with how confusing everything must be and explained that the MRI showed an area next to the resection cavity that appeared brighter than normal. She said this could be one of three things: Option A: Inflammation from the seizure; Option B: Scarring from my past radiation treatments; or Option C: New tumor growth. It felt like a game show. Which door would fate choose? I really hoped it would be A or B, but the only way to know would be to get a repeat MRI in a month.

Waiting:

There I was, left with a month of grueling uncertainty. Having been in this position before, knowing that the “what-ifs” can drive anyone crazy, I decided to continue with my winter break plans as normal and left for a two-week trip to Israel. It may have been one of the best decisions I could have made. I continued to have symptoms such as headaches, pins and needles, and often feeling like a seizure was about to start. In response, I increased my medication dose, which made me incredibly fatigued. I couldn’t stay up too late and had to monitor how much I exerted myself. Despite all this, traveling kept me distracted from my medical uncertainty. It gave my mind a safety net to focus on the moment rather than drown in a sea of never-ending thoughts.

I returned to Berkeley to start spring semester of medical school with three days left until my MRI at UCSF. I have written a lot in the past about the anxiety of encroaching scans, colloquially termed, “scanxiety.” In fact, I did a podcast episode with Dana Farber discussing this topic.

Even though I knew what to expect emotionally in the days leading up to my scan, time slowed down to a grueling halt. Three days felt like three months. Fortunately, I had the opportunity to hike and spend time with a close college friend who was interviewing for residency positions in the Bay. Continuing with the parts of life you love, even as hard as it might be, is the best way to get through “scanxiety.”

January 17th MRI:

I was lucky that my Mom, and her fiance Mark, were able to fly into San Francisco for my MRI scan. Since I had to be at UCSF at 6:45am, and the Bay Area traffic is horrible, I stayed at their hotel not far from UCSF. I arrived at the lobby where they were having coffee. I hadn’t seen them since my trip to Israel, and while I tried to share some highlights from my travels, all our minds were focused on the looming scan. I sat with my Mom on the couch and told her I wasn’t optimistic about the scan given how I had been feeling over the past month. She shared her concern, wishing I didn’t have to be going through all of this again, but encouraged me to wait until we had more information. It’s pretty amazing. People often think the patient, the person with cancer, is going through the most challenges, but in my mind for a caregiver to remain strong (a mom to keep herself composed when her son is going through illness) may be the greatest challenge there is. Yet somehow my Mom always seems to be able to do it.

Dazed with little sleep, we made our way to UCSF the following morning. I didn’t even realize until reaching the campus that I was wearing my Berkeley-UCSF Joint Medical Program jacket. Anyone passing by probably saw a medical student showing his mother where he goes to school rather than a concerned patient and caregiver trying to find their way to the basement MRI for a lifechanging scan. It was this moment when my dual identity as a UCSF medical student and UCSF patient became tangible.

I checked in at the front desk of the MRI department, making sure to specify I had an appointment for a scan rather than to see a patient’s scan (…In retrospect, I probably shouldn’t have worn that jacket). I was brought from room to room to wait, change, and wait some more. The unfamiliarity of UCSF’s system was discomforting. Since I was 12 years old I have received countless MRIs, and I know by heart how the scan experience goes at pretty much every major Boston hospital. Despite being a MRI veteran, this change of setting unexpectedly knocked me off balance. The rhythmic sequence of noises from the machine were different too. Usually I can fall asleep, but I stayed awake, too afraid that a slight movement may affect the clarity of the scan.

Afterwards, I brought my Mom and Mark to the library to grab a coffee and show them the beautiful view of the Bay, the same view I marveled at when I interviewed at UCSF a little over a year ago. The same view that gave me one of those gut feelings that this place, the school, the Bay were the right place for me to be. It never occurred to me that this view of opportunity could become one of sorrow.

We left the library towards my appointment with the neurooncologist. I continued to wear my jacket perhaps as a disguise to why I was there, though my expression couldn’t hide who I was at that moment. My vitals were taken, and I had lost weight…again. It is a challenge I’ve been working hard to overcome since losing 20 pounds to my past chemotherapy treatments and voracious metabolism.

After answering some questions, we were escorted to my doctor’s office. Standing with my doctor was a resident I knew. My college friend’s boyfriend. I had mixed emotions. The last time I saw him was in Chicago, he’s nice, incredibly smart (i.e. he’s in the top neurosurgery residency in the country), and even helped raise money for the annual Boston Brain Tumor Ride when I was going through my last recurrence. I was happy to see him, honestly didn’t mind that he sat in on my appointment, but wished it wasn’t under these circumstances. It was yet another instance when my patient and non-patient identities collided.

It also wasn’t the first time I saw my doctor either. While I was a patient at Dana Farber, my doctor was a fellow for my primary neurooncologist/healthcare “Yoda”, Dr. Wen. It was nice to have some continuity in my care even though I was at an institution on the other side of the country.

We sat down, five of us total in a relatively small exam room, and my heart pounded so hard that I could see my shirt moving to the rhythm of my heartbeat. Immediately, my doctor smiled and said, “the scan looks good!” You would expect immediate relief, but I was floored, unsure if I heard her correctly, and perhaps mentally blacked out. How could that be possible (…not sure if I thought or said out loud)? I had my first seizure in three years, my symptoms had been increasing in frequency and intensity, but everything was okay? I didn’t want to show anything but jubilation, but inside I was deeply confused. She explained that the spot they were concerned about at the emergency department on Christmas Eve had become slightly smaller. This was suggestive that the “brightening” of the spot was likely “Door A” (i.e. inflammation from the seizure).

There was a caveat though. The scans from Boston were hard to compare to the scans at UCSF. Supposedly given differences in imaging technique the scans in Boston are like slices of bread whereas the scans at UCSF are tortillas. As a long-time patient and now medical student I was pretty blown away that in 2018 MRI scans in the U.S. are not uniform. (…Likely a result of the growing corporatization of healthcare…but I digress)

I asked why I started having a seizure and neurological symptoms if everything was “okay,” and my doctor explained it can happen at any time from existing tumor, past radiation treatments…it was unknown. While still a little unsatisfied by the ambiguity of it all, I sensed the upbeat vibe in the room and leaned into the good news. We scheduled a follow-up MRI in two months to double-check the results and get an “apples to apples” comparison, but my doctor repeated, “this is good news!”

We left UCSF and I was exhausted, happy, confused, and overwhelmed. I had spent the past month in a headspace preparing myself for a recurrence and the resulting uncertainty it would entail. Suddenly, everything was okay. Why didn’t I feel okay? It was difficult to make such a drastic mental transition.

Knowing how my mind constantly spins, my Mom and Mark brought me to a delicious brunch where we debriefed on what just happened. We realized there was potentially a caveat in the news we received, but naturally embraced the hopeful reality that everything was in fact okay. It was time to leave behind the whirlwind of the past month and get back on track with school and my life in the Bay.

Getting Back on Track…I Thought:

After brunch, acting as if one of the biggest days of my life suddenly became like any other typical day, I took public transit back to Berkeley for my first class of Spring Semester. I go to an amazing school where we learn medicine entirely through small group case-based learning. Before we start each session we “check in.” Since we depend on each other for our learning, this allows us to let our classmates know where our head is at coming into the session as well as give each of us an opportunity to become fully present in the space. I arrived at class still processing the news and emotions swirling in my head. I had somewhat planned for this moment in case I received bad news, but I didn’t plan for things to be ambiguously good. Rather than try to explain these messy emotions in a short check-in, I opted to tell my classmates, faculty, friends, and even myself simply that the scan was good! I said I’d need another scan to confirm it all, but to me that caveat became less important as the good news opened a window of opportunity at the start of a new semester. All I wanted to do was get back on track.

So, I moved forward. I started developing a masters project that I was very excited about related to the psychosocial impacts youth experienced following the October wildfires in Northern California. I was personally engaged, academically interested, and felt like I was developing something that could really make a difference. I also engaged more clinically. I went to preceptorship with a family physician and shadowed at Oakland’s Multi-Specialty Transitions Clinic for transgender patients, which was an energizing and powerful experience. Outside school I went on hikes practically every weekend, took part in an adaptive athletics CrossFit group in San Francisco, and continued to develop a high-activity brace with an orthotist/prosthetist at UCSF. I also started dating more, to the point where my class joked that I was perhaps going on more dates than everyone combined. Essentially, I was living my life and setting roots. I was getting back on track after a fall semester dealing with the loss of my father to cancer and a winter break unsure if my own cancer had returned.

Yet amid all of this I started to get headaches more often, felt dizzy, fatigued, and had strange sensations in my right hand. Then, on February 16th, just after picking up groceries for what was going to be my first ever weekend backpacking trip, at Big Sur of all places, I had another seizure in my arm. Sitting in the kitchen with my two friends contemplating what to do next, I was less concerned with the seizure, and more focused on whether I could (or should) go backpacking. My first seizure happened just before Israel and now this time it was right before backpacking. My skin crawled, so frustrated that whatever was happening in my head was getting in the way of letting me live to the fullest.

I increased the seizure medication dose, and my two ridiculously amazing friends managed to turn our backpacking trip into a Santa Cruz weekend with a Big Sur hiking day trip. I remember hiking five miles straight up to a grassy clearing with the Pacific coastline and staggering California cliffs just beyond the tree-line. Exhausted from both the hike and the medication dose, I found a rock to rest my head on. I closed my eyes listening to the birds and feeling the wind brush across my face. I knew that whatever was going on inside my head, I needed to keep doing what I love for however long I could. What started to scare me though was that the caveat to my good scan results, the MRI imaging differences, was becoming a more likely possibility, and things were not going to be okay.

For the next month I kept a symptom journal arranged in a table with date, symptom, and duration of symptom. Almost every day I had to add a new row: “2-18-2018, right hand numb, 30 seconds; 2-19-2018, dizzy and fatigued, 1 hour.” February 20th, 21st, 22nd, dizzy, feeling of seizure starting, fatigued, headaches, the list went on and on. I knew things were not alright, but a part of me didn’t want to believe it. I continued as best I could to focus on school and life until my MRI scheduled for March 10th. I didn’t want to change anything I was doing until I had a reason to do so.

Diagnosis

On the morning of March 10th, 2018, I was diagnosed with a brain tumor for the third time. I sat in the exam room with my Mom on speaker phone. I knew she wanted to be there in person, but I felt it was unrealistic to have her come out to San Francisco every time I had a scan, especially if this scan ended up being good news again. She would have flown across the country in a heartbeat but stayed in Boston to respect my wishes.

My doctor came into the exam room and said hello. I’ve been through enough scans to know immediately from the moment the doctor walks into the room if the news is good or bad. The fact she didn’t immediately say that the scan looked good was deafening. (…For any medical students or physicians reading this, I’d suggest greeting the patient the same way every time you see them regardless of the news since any change in routine signals there is something going on.)

Rather than my doctor immediately pulling up my scans, she asked me questions regarding the symptoms I had been experiencing. If my mom was in the room, we both would have looked at each other and immediately known that something wasn’t right. I can only imagine what the first few minutes of my appointment must have been like for my Mom trying to hear everything through the phone on the East Coast.

My doctor told me the symptoms I was having made sense. Now that they had an “apples to apples” comparison between MRI scans, it was clear there has been new tumor growth. What seemed to be inflammation from the seizures was in fact tumor. Three years prior when my pediatric neurooncologist told me about my recurrence, I cried. This time, there were no tears. My heart sunk into my stomach, but I wasn’t surprised. I knew how my body felt when I had my last recurrence, and I had been feeling the exact same way since my first seizure on Christmas Eve. All the uncertainty, the questions I had about why I was feeling this way when everyone said things were “normal,” became clear.

Immediately, I shifted into patient mode. With my computer in hand I started taking notes as my doctor explained the situation. There is a ball of tumor extending from the 2014 tumor site that is now growing into the resection cavity. This small ball, about a centimeter in diameter, seems similar imaging-wise to the tumor growth I had before. She moved on in the scans to news I was not expecting and hadn’t prepared myself to hear so soon in my experience with a brain tumor. She pointed to a small strip and said she is concerned this spot may be different…that it may have evolved in grade.

Historically the World Health Organization classified brain tumors by aggressiveness with Grade 1 being the least aggressive and Grade 4 the most. To give you a better understanding of my situation without having copies of the images right now, I have leftover tumor surrounding different parts of my 2004 surgical resection cavity. All these spots are located next to or partially within my motor cortex, which controls movement on my right side. This is why a small tumor can cause big problems. The severity is less related to size, and more a function of aggressiveness and location. Some of the tumor spots have remained dormant since my surgery, while others (like in 2014), started to grow again. With oligodendroglioma tumors they have certain characteristics radiographically on the MRI scans, and up until now, all the remaining spots (dormant and growing) have continued to look like my original diagnosis of a grade two oligodendroglioma. This new strip my doctor pointed to seems different. During the natural history (life course) of a glioma tumor they can either remain the same or eventually evolve into a more aggressive form (grade III or IV). My doctor’s concern is that this one small spot may have evolved, which changes the game entirely.

We continued the appointment with my doctor explaining all the treatment options available with the goal to stabilize or slow down growth of the tumor: surgery, chemotherapy, radiation, and clinical trials. My mom and I were both confused when surgery was mentioned. It was clear in 2014 that surgery was not an option, so why could it be considered now? Was it because my tumor was growing in a different direction, did we need to be more aggressive, were we running out of options? My doctor wanted to bring my case up with UCSF’s weekly tumor board and schedule an appointment for me to see a neurosurgeon. We discussed other forms of treatment, questioning if radiation was a possibility given how recently I had proton beam therapy. We also talked about available clinical trials. Unfortunately, given the molecular characteristics of my tumor (…something I will dive into later), I do not qualify for a lot of the trials available. Additionally, of the trials I do qualify for, my doctor thought it would be too risky given the location of the tumor. Essentially, all we could do now was wait until UCSF’s tumor board met and schedule second opinion meetings with my team of doctors in Boston when I returned home for spring break in a couple weeks.

I left the appointment dazed. UCSF’s neuro-oncology suite sits at the top of an eight-story building on a hill overlooking the San Francisco Bay. I stared out at the view and thought about the life I have worked hard to create for myself since moving to the West coast in June. Yes, it had already been a rough year with my father’s passing and the whirlwind of uncertainty following my Christmas Eve seizure, but I had managed to lay new tracks for myself in the life I was developing. Now what? All I could think about was the fact it had only been two and a half years since finishing my last round of chemotherapy. That was supposed to give me time. More time I thought. Time to move forward. Did I use that time right? How do you set roots when cancer uproots your life every few years? Was most of my twenties, or my life for that matter, going to be a story of cancer? As I walked towards the elevators, the view behind me, one thing was certain: I couldn’t let this tumor pause my life again. If the reality of my life is always going to be kicking the can of cancer down the road, I’m going to enjoy the view along the way.

In the next blog post I’ll discuss my appointments regarding treatment options and my current treatment plan.