I noticed early in my childhood I wasn’t as tan as my Mexican father, nor did my skin match my White mother’s. I’d often search in the mirror, unable to pinpoint a single feature that looked to come from either of them. I was too young to grasp what it meant to be biracial, or how it would shape my life.
My White grandmother raised me for most of my childhood, and I didn’t know much about my father until he was given custody of me when I was 9. I’d quickly learn he had a deep sense of machismo pride and felt the burdens and pressures of being an undocumented immigrant in this country. He was also an alcoholic who beat me the same way he had my mother long before.
Over the four years I lived with my father, I rejected anything he tried to instill in me, especially the Mexican culture that was so important to him. I refused to say the Spanish words he taught me and refused to eat the food he gave me.
It took years of healing for me to finally identify as Hispanic, thanks to Mexican friends in school accepting me as one of their own, even if I felt I hadn’t earned my place. But strangers, too, continually reminded me of how I looked to the world. White people felt the need to say “gracias” after I held a door open for them, or someone would confuse me for a valet attendant after I parked my own car. This was true when I watched from the back of a police cruiser as a White officer tore my car apart, believing I had drugs after he felt my racing heart.
Like many biracial people, I’ve often felt in search of belonging, of a space to fit in. I enrolled in college classes focusing on Latino literature, reconciled with my father and slowly immersed myself in the food, language and traditions I once rejected. Shortly after this, he was deported to Mexico. I felt a weight like I never had before.
I will always be both White and Hispanic, and learning about being biracial in America will be a lifelong journey. But when I look in the mirror today, I see more of my parents’ traits in me, and it’s through those features that I see a clearer version of myself.
Today is my birthday, and the first anniversary of my mom’s passing from cancer.
Over the last few weeks, I’ve wondered what this day would be like — how does someone commemorate a day linked to death and life, pain and happiness? It’s been a difficult, and unique, thing to consider for me.
Grief is complicated and challenging, and we all have different ways of managing it after losing a loved one. Since last September, I’ve tried making more of an effort to do acts of charity (like giving blood, donating to nonprofits) in memory of my mom, who was the most endlessly giving person I’ve ever known.
I initially thought of making another donation today, but I wanted to do something in-person this year (which also allowed for social distancing).
So, I took some of the money I saved up for today, split it into $20 bills, then rode my motorcycle around the city and passed them out to unsuspecting strangers. I gave one to a man waiting for his car outside of a mechanic, an older woman sweeping outside of her trailer home, a man waiting under the hot sun for a bus ride, and a few others. Yes, this was completely random, and I’ve never done anything like this before. I think my mom would appreciate that aspect of it.
Grief is hard, but giving is easy. Helping others can be a way to alleviate that grief, if even for a day. I love and miss you, mom. I hope I can someday be as good a person you were.
At 7:23 in the morning on September 4, 1987, my mother welcomed me into the world. At 7:45 a.m. today, exactly 32 years later, I was by her side when she left it. There are many things that I could say about how lovely a person my mother, Toni Cathleen Hahn-Quant, was, how endlessly giving and loving she was to everyone around her. Those who knew her can attest that this isn’t hyperbole — even in the four years after her Glioblastoma diagnosis, she held on to what mattered most to her and continued to help people in need. Shortly after my mom had her first craniotomy to remove her brain tumor in 2015, she and I went for a walk outside on an early morning. It was there that she had me look in her eyes as she told me if she died, she would be okay, because she had a wonderful life. She repeated that again just a few weeks ago when her health began to deteriorate, but we were still holding on to hope she would improve. It is the deepest sadness of my life that my mom’s voyage has come to its conclusion, and I’ll miss her to no end. She was the perfect mother for me. Thank you for this life you gave me, mom.
“If you’re human, you have a heart. And sometimes that heart hurts — it truly hurts and you feel it in your chest — and you’re going to cry. It’s okay to cry.” — Elois, who I shared a conversation with at my mom’s physical rehab facility this week, after telling me about the death of her own mother five decades ago. If was one of the most refreshing conversations that I’ve had recently, and Elois was filled with a knowledge and confidence about life that can only come with decades of experience.
On the opening day of Complex’s new headquarters in L.A., I showed up early to settle in to the office, located on the second floor of a plaza in West Hollywood. But the doors were still locked, and with hours to go before anyone would arrive, I went to a nearby balcony to check out the street below. That’s when I saw a pigeon flapping its wings violently and appearing to have a seizure at the steps of the building’s entrance. I watched from above as passersby gawked in disgust at the animal, until a custodian came to the rescue and retrieved the bird from the ground with his hands. I remember thinking how kind it was that he came to help the bird, until I saw him a few moments later empty-handed with the pigeon nowhere to be found. After walking down a long corridor to a deserted smoking area, I found the bird facedown on the ground, still flapping its wings. I rang local animal hospitals for help, and the only one that answered said they‘d send someone and would call me when they arrived. I stayed with the bird in this lonely corner of the building for the next hour until the shaking and flapping stopped, and it never moved again. I sat down, sad that I had watched this animal die in such a manner. When I returned home later that night, my mom asked about the day, expecting to hear about my new coworkers and any articles I might have written. Instead, on the verge of tears, I told her about the bird. She would point out that the hospital was likely never going to send anyone out for a pigeon (they never did call me back). She also assured me that I had a good heart for trying to do something. Still, I had no idea why something so inconsequential had affected me so strongly. That was in 2014, and a few months later, my grandmother passed away. A year after that, mom was diagnosed with cancer. I still think about that morning, trying to find some meaning in it. But some things don’t have to be overly complicated, and are instead as simple as sitting by someone’s side — especially when things are dire and you don’t know how they’ll turn out — and showing them they are not alone.
Reading this while sitting next to mom as she gets her latest round of immunotherapy for her brain tumor.
“When Breath Becomes Air” is written by Paul Kalanithi, who was completing his training to become a neurosurgeon when he was diagnosed with stage IV lung cancer in 2013. The memoir chronicles his life and his experience after the diagnosis, and I bought this for my mom shortly after she was diagnosed in 2015.
She didn’t read much of it, she instead read “Life of Pi” and some James Patterson books, so I recently decided to read it for myself… and I’m going to keep using the bookmark of hers I found inside.
I wrote this down at the office last June when my mom’s oncologist called to say her latest scans showed no sign of brain tumor. I took a picture because it was something I didn’t think I‘d ever be able to write when she was diagnosed in 2015.
Now my mom is preparing for her third brain surgery to remove another fast-growing tumor that has doubled in size over the last few weeks. With each operation, more and more of her brain tissue is being cut out along with tumor, and we’re now getting to the point where doctors are close to removing tissue that is vital to her motor functions. People diagnosed with GBM, like Sen. John McCain, usually have a lifespan of 14 months post-diagnosis, and we’ve been fortunate so far.
Earlier this month in an interview with Salon discussing his book, “But What If We’re Wrong?”, writer Chuck Klosterman was asked to name something we do today that the future will view as ridiculous.
“If we ever get to a point in medicine – and I assume that we will – where we have a better way to combat cancer, maybe with genetic engineering or something,” Klosterman says, “I would not be surprised if chemotherapy will seem like bleeding people with leeches. It will seem crazy that we poisoned people to make them better.” He goes on to say that chemotherapy isn’t “crazy,” but it will be hard to explain its usage to people centuries into the future.
During the weeks leading up to my mother starting treatment for her Glioblastoma brain tumor, some friends and neighbors voiced their opinions on chemotherapy to me. They asked, “Is your mom sure she wants to put her body through that? Does she understand what it will do to her?” They recommended that we look into natural remedies, or consider skipping treatment altogether so that she wouldn’t experience its side effects. Many paused when they said this, letting the meaning of what said sink in—that living a shorter life may be preferable to living a longer one with chemotherapy’s side effects. The treatment’s reputation of being a poison was the focus of their thoughts. Klosterman’s comparison echoes this perspective.
Bloodletting, the practice Klosterman is referring to, is the act of bleeding out a patient to remove an illness. It was done centuries ago using a special bloodletting kit or leeches. As the blood drains, the patient removes the “bad blood,” the source of the illness, and loses a healthy amount of “good” blood in the process. On the surface, this seems not unlike chemotherapy. In chemotherapy, chemicals (the poison) enter the body to target fast-replicating cells, regardless of whether they are healthy or cancerous. With side effects such as fatigue, nausea, and hair loss, the hope is that the poison will disrupt the growth of cancer cells to prolong the life of the patient. It’s the definition of a “scorched earth” method of treating a disease.
Chemotherapy will indeed seem primitive when we can compare it to the cure for cancer, whenever that is developed. But to make its comparison to bloodletting is to ignore their vastly different origins. Moreso, it disregards the work of scientists to improve chemotherapy and the lives it has prolonged since its introduction almost a century ago.
(Above is a chart from the 15th century showing parts of the body to be bled to relieve a corresponding disease.)
First off, bloodletting began in antiquity and was founded on the idea that our health relies on the balance of four components, called “humors”: yellow bile, black bile, blood, and phlegm. An ill patient was thought to have an imbalance of these components, so draining blood in strategic places would shift them back into place. The more drained blood the better, so patients were often bled to the point of fainting. The practice lasted for centuries as a means of relieving a variety of diseases, though there was never evidence to back up its efficiency. As evidence-based medicine began to develop just before the 1900s, the supposed benefits of bloodletting gave way and its use dwindled as our knowledge of medicine progressed. It was a more painful version of snake oil.
Chemotherapy, on the other hand, has only ever been improved on thanks to science. The first patients to undergo chemotherapy in 1942 were injected with a chemotherapic agent developed by studying mustard gas and nitrogen mustards during the world wars. Scientists saw that the symptoms of their advanced lymphomas were temporarily improved—and this sparked development into what would become the current “standard of care” for cancer patients. Today, there are more than 100 different types chemotherapy drugs to treat cancer or ease its symptoms. These drugs are considered poisons and oncologists will tell you that. They will also say that advancements in chemotherapy in recent years have made it an even more potent tool in an imperfect toolbox to fight cancer. Science has improved on chemotherapy, not banished its use.
Bloodletting was based on mythology and guesswork. Using it to treat infections, headaches, and other diseases ceased once we determined that it didn’t do, well, any of what people believed it did. Bloodletting is now only used in exceptional circumstances, such as in the treatments for hemochromatosis and polycythemia (two diseases that weren’t discovered until after bloodletting had already been deemed as pseudoscience).
While chemotherapy will one day look primitive in comparison to advanced treatments, as will most modern day treatments when compared to their future replacements, chemotherapy won’t be viewed as “ridiculous” or barbaric in the eyes of future scientists. These scientists will understand that their work is part of a long chain of events built by scientists who worked within the means of their time to push their limits. These are the same scientists who recognized bloodletting as pseudoscience.
It’s up to a patient to weigh the benefits of chemotherapy against its side effects. Chemotherapy, with all of its negatives, has prolonged lives during a time when other treatments aren’t available. My mom is still alive nine months post-diagnosis. As her doctors have said, there’s no doubt that chemotherapy is what has gotten her to this point.
It’s not ideal, but chemotherapy is a treatment that works far more often than bloodletting did for the diseases it supposedly relieved. This isn’t the Evil Queen slipping Snow White a poisoned apple, or even draining out her blood, for that matter. Let’s not misconstrue chemotherapy’s place in the progression of cancer treatment.
I recently shot photos of an FDA-approved treatment we’ve recently adopted for my mother’s brain cancer. Every three to four days, my stepfather and I shave my mother’s head and replace a series of four pads that stick to specific areas of her scalp. They connect to a generator that produces an electric field that’s delivered to the tumor through a collection of disks located under the pads. The entire replacement process takes about 20 to 30 minutes, and she wears the device for at least 18 hours a day, every day. Patients get a backpack to carry the generator and portable batteries when there isn’t a power source nearby.
When used in conjunction with chemotherapy, the treatment, called Optune, is shown to slow the growth of brain tumors and increase the survival time of patients by months.
This weekend my mom made her fourth trip to the ER in six months. She’s in relatively stable condition for having a tumor in her brain—thanks to an arsenal of medications to help relieve headaches or swelling—but it’s important that she pays attention to when those levels of pain or discomfort increase over normal levels. It’s one of a handful of symptoms we have to monitor any changes that might be going on in her head.
Here she is doing stretches while waiting to be taken in for an MRI at Little Company of Mary in Torrance.
The picture above is of my mom and me at a local wig shop where every synthetic wig—including the ones I have on in these pictures—went for no less than $200. I’m not one to question the expertise that goes into crafting a wig, but hey, I’m not paying that much for a wig even if it came off of Trump’s head.
So we visited the American Cancer Society’s Long Beach office to try one of the free wigs they offer cancer patients. The process was a breeze to set up: Ronda, one of the nurses from my mom’s insurance company, mentioned the program to me a few weeks back. I gave ACS a call a few days ago and we set an appointment for a fitting. It was only a 20-minute drive from Torrance, and we were out of there in just about the same amount of time—with a free wig in hand that looked remarkably similar to the $200 one above. Also, it was made of real hair, if you happen to be into that kind of thing.
After seeing my mom go from flowing locks to shoulder-length chopped hair, to being bald on one side thanks to radiation, to completely bald, the wig is comforting and familiar. From the right angle, for however long the moment lasts, things feel normal again. My mom was the most excited I’ve seen her in months. “I’m sexy, baby!” she said as she looked at her reflection in store windows.
Today was a win. There haven’t been many times I’ve been able to say that recently.
A representative from Novocure is coming tomorrow morning to get mom started on Optune.
One of the instructions for patients before the visit? You have to get rid of that hair on your head. So we did.
I asked mom earlier to hold off on cutting her hair so that I could take pictures of the entire process, but she went ahead and cut it anyway. I’d tell you here that impatience is a side effect of the medications she’s taking, but impatience has been a characteristic of hers for as long as I can remember.
She still had stubble in a few areas, so I brought over my Panasonic electric shaver and we got her scalp smooth to the touch. Mom already had a large bald spot on her right side due to radiation. I went over the remaining sides at least a dozen times to make sure it was perfect. I’ve cut my own hair for years, and have occasionally cut the hair of my friends, but shaving my mom’s hair? Something I never thought I’d do.
One of the things I’ve struggled with throughout my mom’s treatment is working within the borders of “Standard of Care.”
Standard care for Glioblastoma and most cancers aren’t pretty or precise. There are only a few tools at the doctors’ disposal to treat patients (surgery, chemotherapy, radiation, and some variations in between), and, as in the case of GBM, none of these tools will lead to a patient being cured. As the weeks passed, I could guess what my mom’s doctors were going to say when we walked into their offices. Her doctors could only go through an approved treatment checklist that laid out loud and clear our limitations with cancer care. It’s no one’s fault, but I recognized that we were marking off a checklist that only runs so long.
I read about the Novocure Optune device in a New York Times article while researching other treatment options. It was recently approved by the FDA, and while it’s not “standard of care” yet for GBM patients, it seems to be well on its way. When I asked her doctors about this, they had no idea what I was talking about. I’m being literal. One doctor looked me dead in the eye and said, “I have no idea what you’re talking about,” topped it off with an awkward three seconds of silent eye contact. I might as well have asked if he heard about moon beans curing cancer and if he could help me retrieve them at the end of the rainbow.
What gave me confidence was when mom texted me about seeing something on the local news that sounded similar to what I talked about. She sent me a video of what she saw—and wouldn’t you know, it was Optune. You have to go through an approved doctor to get prescribed Optune, and the closest ones were at USC Norris Cancer Center. Unfortunately, none of the doctors there were under my mom’s insurance network. After more than a dozen calls to her insurance company, and talking with USC’s new patient referral team, I gave up on trying to get approval. After sitting on the idea for a few weeks, and receiving the news that an MRI showed that my mom’s tumor had stayed the same size, I decided to go ahead and pull the trigger on going there out-of-pocket to talk about Optune, clinical trials, and to get a second opinion from Naveed Wagle, a neuro-oncologist there. At the same time, I sent my mom’s records to the neuro-oncology center at UCSF for an over-the-phone second opinion consultation.
This morning while walking to my mom’s house to leave to USC Norris, I got a call from UCSF with their second opinion. Their opinion was: schedule surgery soon to remove the recurrent tumor, clean out the swelling edema around it, and after recovery, jump right into 280mg chemotherapy treatment (her first round of chemo after her initial surgery was 140mg). The doctor spoke with urgency. I was nervous. I relayed the information to my mom and told her we should make our decision after we visit USC.
We met my friend Gloria who works at USC, chatted for a bit, and met with Dr. Wagle about an hour after arriving. My mom was just past the point to qualify for any clinical trials, but after reviewing her records, his opinion was that the treatment plan we were about to embark on (280mg of chemo for five days every 28 days) was the right one, and he didn’t recommend surgery at this point. When I brought up what he thought of Optune, he didn’t flinch. Wagle knew what I was talking about, and he prescribed for her.
When we got home, the impression between both of us was that we’d stay on course, regardless of how cold and hard it’s been. From my perspective as a caretaker, this felt like the most productive day we’ve had since this all began, even if nothing really changed other than the Optune prescription. We’re still on the same path, but there might be a little light in the distance.
The verdict from today’s MRI: tumor is still there, and may or may not be the same size. As they say in politics, it’s too close to call, at least for my eyes. Recount, yeah?
Ronda, the nurse who calls me once a week to chat about any developments with my mom, happened to give me a ring as soon as I finished scanning the report. There were some new terms in it, which I understood on their own, but I needed to understand in relation to the tumor—like “hemorrhagic elements” and “necrotic.” I read the entire report to Ronda, twice (she’s a champ). Her impression was it wasn’t entirely bad, but she agreed it wasn’t great. It’s enough to keep me sane until we see the doctors next week and get their thoughts.
Half of my mom’s body is sticking out a machine that wailing so loud it sounds like it’s on the verge of implosion.
As the MRI machine scans her brain, a series of loud alarms, buzzers, and rings flare off. We have on earplugs. I’m sitting about seven feet from my mom, and there’s a mirror just above my mom’s line of sight. It’s tilted at an angle, and she looks my way. She gives a thumbs up.
We wrap up in about a half-hour, and the disc we’re handed contains dozens of images of her brain—virtual dissections of her most vital organ and the mass inside of it that threatens her survival.
The report will reveal to us if the six weeks of chemotherapy and radiation had an effect on her tumor. While we won’t get her doctors’ verdicts until we see them later this week, I can compare this report to the tumor’s measurements in the pre-radiation and oncology MRI she had in December. I carry a copy of the December MRI report on my iPhone, so as soon as I look, I’ll have a version of an answer.
I’m somewhat accustomed to reading medical reports now. The measurements—given in three dimensions, i.e., 3.5×3.6×4.6—will tell me if her tumor shrunk, stayed the same size, or grew. If it shrunk, it would relieve some of my worries. It’ll be evidence that her treatments had a significant effect on its growth. In this scenario, we’d likely stay on chemotherapy and hope that it keeps fighting the tumor.
If the report shows the tumor stayed the same size, it wouldn’t be bad news, and not great, either. I’d feel compelled to look at other options again. This could be treatments to supplement chemotherapy, like Novocure Optune, or clinical trials. By far the worst news would be if it grew. But this is a game of numbers, so if it only grew by a millimeter and not a centimeter in either direction, it wouldn’t necessarily mean we need to raise the alarms. Any more than a few millimeters, and we’d more than likely explore clinical trials or another surgery.
I’d say my mom’s doing well, considering she hasn’t shown any of the symptoms that she had prior to surgery. Though I offer to drive anytime we travel, she wants to drive each time. She’s mobile, and her headaches seem under control and less frequent. While she’s not worse, she isn’t noticeably better. I wish I had my own Symphony Maestro so I could monitor the tumor every day and know if it grew even a millimeter.
I’m going to have to give in a check the report sometime soon. Here’s to, hopefully, some good news.
For six weeks, radiation targeted a brain tumor located in her right frontal lobe, with the goal of killing tumor cells or inhibiting their growth. Here, my mom holds the radiation mask that was molded specifically for her, which she wore for all 30 of those sessions. The bottom of the mask has locking mechanisms that connect to a table that keeps her in the correct position while she’s under the machine, and helps the radiation beams target the same area each time. In a few weeks, we’ll see how well the radiation, along with the first round of chemotherapy, worked against the tumor.
The chemotherapy she used is called Temozolomide, which is often referred to by its brand name, Temodar. It’s an oral chemo drug, as opposed to an IV administered one. Of course, the word “chemo” brings its own set of fears (my mom calls it her “poison,” which I’ve tried to get her to stop, at least when we’re talking to doctors and nurses who need exact names of drugs and not nicknames, even if those nicknames are accurate in their own way). My mom took to the chemo extremely well and didn’t vomit at all throughout her treatment, which is common due to nausea.
She was able to choose between two anti-nausea medications, Zofran and Metoclopramide, to take an hour before chemo every night, Metoclopramide being the stronger of the two. THC lollipops helped as well, but these can be tricky if you don’t have experience with them. Have the workers at the dispensary explain the dosage to you in detail. My mom overdosed on a sucker that she sucked on for hours, which ended up in a trip to the emergency room and her yelling, “this is it!” because she thought she was dying. Luckily she wasn’t on chemo that night and was just giving it a test run (she was better a few hours later), but using a sucker is different than taking a pill, and requires some finesse.
Join me in congratulating my mom on completing this first step of her journey, all while keeping a smile on her face.
Tonight my mother took her chemotherapy pills for the first time. Tonight was also the first time I’ve danced with her.
Maybe it was nerves, or just my mom being who she usually is, but she asked me to play my favorite song on. I put on The Rolling Stones’ “Beast of Burden,” but she told me that it wasn’t the song she was thinking about. I was tempted to play John Denver’s “Take Me Home, Country Roads” next, but I had a feeling she was referring to Redbone’s “Come and Get Your Love,” otherwise known as the Guardians of the Galaxy song. I played it from my iPad, and we danced on the hardwood floors of her living room, she did the Butterfly, I did the Arm Wave, and we held each other, swinging back and forth like crazy people.
Soon after she placed the first of two chemo pills in her hand, took a deep breath, and swallowed.
This morning, while my aunt and I visited with my mom, the resident oncologist at Little Company of Mary came in to speak with us.
“What’s an oncologist again?” my mom asked. We’re all still so new to this. This temporary oncologist went on to explain that we’d need to find a radiation oncologist, a hematologist, and a permanent oncologist, and my mom interrupted to ask if she knew for sure that we would need these doctors. The answer, of course, was yes, but my mom’s interruption led the oncologist to mention something the attending physician, neurosurgeon, and nurses, hadn’t yet.
“We don’t know the final [results] yet, but that’s what it usually is, it’s called GBM,” the oncologist said. “It’s the most common cancer in the brain, and we have a protocol to how we treat it.”
There have been words like “cancerous,“ “malignant,” and “seizure” that have been tossed around, but no one had mentioned the three letters “GBM” yet. The oncologist spoke these letters cool and casually. I wouldn’t have thought anything of them if it weren’t for the reaction of my aunt, Denise, who widened her eyes and sat up just a bit straighter when this was mentioned.
After the oncologist left, Denise and I walked out into the hallway, out of earshot of my mom. “From what I researched, GBM is the worst brain cancer you can have,” she told me. “It’s stage four.”
As I listened, I realized I had not been as thorough in my research as I thought, and made mental notes to find out what how many stages there were, and to look up the goofy-sounding word she told me GBM stood for — Glioblastoma. It sounds like a villain from a cartoon.
“Well, it’s the most common type of brain cancer,” I replied, repeating what the oncologist said, and mistakenly believing it implied that treatment for GBM would be more effective than other cancers because it was common.
I searched the letters on my laptop. I wanted them to slip from my memory, to mix them up with the other 23 letters of the alphabet and forget their combination.
There are 16 tabs open in my browser. As significant as the surgery was, it’s only the first step in a treatment plan that cannot cure a GBM patient—it can only attempt to slow the damage of the tumor, a tumor that is certain to grow. Median survival time for GBM patients after the diagnosis? Fourteen months.