One thing I haven’t done much of over the last few years is personal writing, even though I’ve kept a journal on and off (very on and off) since I was in elementary school. Twelve weeks ago, I made it a goal to journal once a day, keeping track of my progress on a whiteboard. Today I penned my 82nd straight journal entry — my longest streak ever.
There are many benefits to journaling, with research showing it can reduce stress and manage anxiety. It also allows me to reflect on my day when I write at night, or it helps me think of new goals and ideas for the day ahead if I’m writing in the morning (which is usually the case).
There are prompts and suggestions you can find online to help develop topics to think about when writing. But my approach so far has been to start by writing around something that happened recently (did I read an interesting article that morning?) or something happening later that day. This works as a warm-up, and soon I’m freely writing about anything that comes to mind.
I’m sure my streak will be broken soon enough, but that isn’t the point.
So far, I’ve journaled more often than not, even if it means just writing a paragraph on some days. That’s something we can keep in mind for many of the long term goals we set our sights on — Keep the fire lit.
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.
Let’s get this out of the way: keeping track of lab reports, medicine, refills, doctor info, and appointments isn’t a barrel of joy for anyone, but the more you keep this information together, the better you’ll be prepared when you or your loved one needs it—and the earlier you start, the easier it will be. Collecting and organizing information is one of the few things you’ll have control of during this journey.
It’s taken some trial and error on my part since my mom’s GBM IV diagnosis to get things organized efficiently (and I had already considered myself a decently organized person). After a recent trip to the ER, I feel confident about the system I’m currently using, enough to share what I’ve learned.
For anyone who’s taking care of someone with a serious condition like GBM, here’s a list of things I think will help, split into three sections:
A quick guide to some terms you will need to be familiar with in relation to a GBM diagnosis
How I organize things from medicine, doctor information, and other important details
Some advice from my observations and experience as a caretaker that may be relevant for you
I’ll update this occasionally with new info, and let me know if you have any tips as well, and I’ll be sure to add. (Of course, keep in mind, this is tailored to my own experience with my 60-year-old mom’s GBM, and your experience will be different, but it may also be similar enough that this may be useful to you.)
A QUICK GUIDE TO TERMS
Important Terms and Definitions Related to GBM
Oncologist: Doctor who manages chemotherapy and other medications.
Neurosurgeon: The leading doctor who performed surgery on the tumor. You may meet with them to monitor recovery, review routine MRIs, refill post-surgery medications, or discuss more surgery.
Neuro-oncologist: A doctor that diagnoses and treat patients with brain and nervous system tumors.
Radiation Oncologist: A doctor who manages radiation therapy and reviews routine MRIs.
Primary Care Doctor (PCP): Another name for your regular doctor (you know, the one you go to when a cold is really kicking your ass).
Medications and Treatment
Benign: A type of tumor that is noncancerous, meaning that it doesn’t spread to other parts of the body, grows slowly, and is (mostly) considered non-life threatening, but this depends on a variety of factors, like the tumor’s size and location.
Malignant: A type of tumor that is cancerous, meaning it can spread to other parts of the body, grows quickly, and is considered life-threatening. They can grow back after removal. GBM tumors are malignant.
Decadron: Steroid used to reduce swelling within the brain after craniotomy surgery.
Pepcid: Used to reduce acid in stomach caused by Decadron
Keppra: Used to prevent seizures.
Temodar: Chemotherapy drug that can be taken orally or through an IV. FDA approved and is considered “standard of care” for GBM patients. Is sometimes given to GBM patients for a round of 30 days, and for subsequent rounds of five days every 28 days at a higher dosage.
Avastin: Chemotherapy drug used for recurrent tumors (tumors that have grown back).
Radiation Therapy: Is typically prescribed for six weeks post-surgery in conjunction with the first round of chemotherapy.
Sulfamethoxazole: Antibiotic pill taken during chemotherapy to help prevent infections (chemotherapy weakens the immune system).
Ibuprofen: Pain reliever that can be purchased over the counter.
Zofran: Anti-nausea medication that can be used with chemotherapy
Metoclopramide: Anti-nausea medication that can be used with chemotherapy, not as strong as Zofran.
THC Suckers: Can be used to treat nausea if taken correctly.
Novocure Optune: FDA approved device worn on the scalp that is said to improve the longevity of GBM patients by weeks or months, but can be cumbersome for patients.
Second Opinion: When you want to explore what other doctors think of the diagnosis or treatment plan, this is called seeking a second opinion.
Clinical Trials: Clinical trials are used for research into potential treatments for an illness. These are not considered “standard of care,” and can show promise, and have their own set of risks. Can look up studies here.
Make a Physical List of Medicine Schedules and Dosages.
My mom has added more medicines to the cabinet than we’ve been able to subtract, and things are crowded. I’ve refilled my mom’s pills in a medicine organizer every week since her diagnosis, and I can essentially recite the names of medicines and their purpose from memory. (What, no trophy for that? Ok then.)
Yet, while that’s useful, it’s not useful if I’m not around when that information is needed. For example, my mom likes to refer to her pills by color or shape instead of by name. When she does use a name, she’ll often use the wrong one, like when she refers to her antibiotics as penicillin (it’s actually sulfamethoxazole, different from penicillin).
In order to limit mistakes or confusion when it comes to what medicines do what and when they’re supposed to be taken, make a master list and post it near the medicine so that’s it’s easily visible.
I did this by making a list with the most important medicines on top, and the least important take-as-needed medicines at the bottom. I gave each medicine a corresponding letter on that list, and then I’d place a piece of packaging tape atop of the medicine’s bottle cap and wrote the letter on it. So, if I needed to find her anti-seizure medication, I could look at the list, see that it was Keppra, and then find it among her pill bottles by looking for the big corresponding letter on its cap.
Match a medicine to a letter or number, and then write the generic name of the medicine along with its medical name (the name that’s on the bottle).
After the medicine’s name, write what the purpose of the medicine is.
Write the dosage and schedule of the medicine.
Use asterisks or colors to mark off the medicines that you’ll place in the medicine organizers. I use asterisks so that when I refill the medicine organizers, I can easily see which bottles I need to go for.
So, it ends up looking like this:
*A) DECADRON (DEXAMETHASONE): Steroid for swelling. Cut a 4mg tablet in half for it to equal 2mg. Take in the morning and as needed.
*B) PEPCID (FAMOTIDINE): Prevents ulcers while taking medications. Take every morning and night.
*C) BACTRIM (SULFAMETHOXAZOLE-TMP): One antibiotic pill. Take on Monday, Wednesday and Friday in the morning and night while on chemo.
D) MOTRIN (IBUPROFEN): For pain. Take as needed.
Use the Cloud to Share Appointments and Important Dates.
When you make an appointment with a doctor or have to remember when to start the next round of chemo, it’s good to make use of your smartphone’s calendar. Add in the appointment as soon as it’s made. If your loved one has a smartphone too, you could take their phone and write it in for them. But, what if you’re at work and the doctor calls to reschedule, and now you need to remember to change the date in your and your loved one’s calendars? By using a shared calendar app, such as Cozi for iOS and Android, you can create a master calendar that will update everyone who is shared with it.
Make Use of Google Drive, Especially If You Have a Smartphone.
Google Drive is an awesome service that lets you upload and create documents that you, and anyone you’d like to share that information with, can access from almost any smartphone, tablet, or computer. If you have Gmail, you can already use Drive, and if you don’t have one, sign up for it here. What’s great is that you’ll have a few gigs of space for free to play with, which will come in handy in the next steps. If you have a smartphone or tablet, download the Google Drive app, so that you can view this information at any time. There is also the option within the app to save documents for “offline use,” meaning you can save them to the app so you can access them without an internet connection.
In Google Drive, you’ll create:
A “super document” of information including basic information, a timeline of the diagnosis, medicine, and doctors names
A “mini document” with only basic info, doctor names, and medicines, so that you can print this out quickly and hand it to nurses when going to the ER or an appointment
A folder to place lab results, doctors notes, MRI and CT reports, and a copy of your loved one’s insurance card (and the medicine chart you made for the home).
Create a “Super Document” of Information in Google Drive
This is going to be your master document of information. Here, we’ll make a Google Document that will have a number of sections:
PRESSING QUESTIONS/ISSUES FOR DOCTOR This will go at the very top, so that you can quickly add in questions that you have for doctors when you need to, and can retrieve it easily while in an appointment.
BASIC INFO This includes full name, date of birth, weight, allergies, and intolerances. SSN is optional.
TIMELINE This is when keeping track of things from the start is helpful. Here we’ll hopefully create a timeline of dates that will take us from when symptoms first occurred, diagnosis, date of surgery, ER trips, dates of MRI scans, start and end dates of chemo and radiation treatments, among other things.
DOCTOR INFORMATION This includes names, phone numbers, and addresses.
COPY OF INSURANCE CARD INFORMATION
Here is a link to a template that I made in Google Drive that you can copy and use for yourself. Having all this information is important. For example, nurses may ask if there have been any changes to the medications, and it’s good to have an updated list with you at all times. If you have an unexpected trip to the ER, the info will be with you. If you’re on the phone with the billing department and need to tell them insurance information, you can ask them to wait a moment while you pull it up on your smartphone. Remember to save this document for “offline” use on your smartphone or tablet, and share it with family members.
Create a “Mini Document” With Only Medicine and Doctor Info For ER Visits
From the “Super Document,” grab the sections that include medicine names and dosages, and doctor information. Paste these sections into a separate document that should be about two pages long. This will be your “to-go” mini-document that you can print out quickly before taking a trip to the ER.
Going to the ER means you’ll be starting from scratch with personnel who have no familiarity with who your loved one is. When a nurse asks what medications your loved one is on, you can hand them a physical copy of all of the information. (You can also hand them your smartphone, but I find a physical copy is easier here).
Of course, you can do this with any trip to the doctor, but if you’re going to a doctor you visit often, they will have your information from the last visit. Just updating them verbally by referring to the Super Document on your phone should be sufficient.
Ask For Two Copies of CT Scans and MRI Disks and Reports
When you get an MRI or CAT Scan, you should get a physical copy of the report, and a disk containing the images (if you can an Apple computer, it will be difficult to view these images if you pop in the disk, so don’t be surprised). Save these in a physical folder or something similar and label them to your liking (as in, “MRI and CT From Trip to ER on 4/15/16″). Get two copies, one master disk for safe keeping, and another you can carry along at your leisure, such as when a doctor you’re visiting for a second opinion needs it.
Save Digital Copies of Pathology Reports, MRI/CT Reports and Doctors Notes (You Can Use Your Smartphone For This).
After each visit, your care doctors take notes that include a brief summary of your visit, what was discussed, and their impressions. You can ask for copies of these notes a few days later. I recommend getting copies of these notes occasionally for your records. If you’re going to seek a second opinion at some point, you’re going to need ALL notes from each doctor. It isn’t hard to get them, but having them ready for a rainy day wouldn’t hurt.
If your loved one had surgery, you should have received a Pathology and Operative Report. If you don’t, ask your neurosurgeon for copies. Once you have these, and any other documents of important, like MRI/CT reports, save them to your home computer and (you guessed it) save them to Google Drive. The good thing though is that this is super easy if you use your smartphone. If you have an iPhone, download Scannable. By using your phone’s camera, the app can create PDF files of all of these documents. You need an Evernote account, and you can either leave them within Evernote, or log into your computer and download them on your own.
SOME TIPS AND ADVICE
Helpful and Affordable Things to Buy After Surgery
Two Sunday-Saturday Medicine Organizers: I use one organizer for daily pills like Decadron, Pepcid, and Keppra, and the another for chemo and nausea medicine (which are generally used within an hour of each other). To make it easy, get two in different colors or designs, as long as you can tell them apart. Pill Splitter: After her craniotomy, my mom took a daily dose of 8mg of Decadron, a steroid that helps with brain swelling. Over the course of several months, we tapered down to about 1-2mg. We couldn’t find a tablet that came in less than 4mg, and the pill splitter helped us get the right dosage more accurately than by others means (ahem, kitchen knife). Blood Pressure Monitor: High blood pressure (like, say, 145/95) is something to watch out for, especially in the days following major surgery. Get a blood pressure monitor to keep track of things, and get used to taking a reading at the same time every day. If everything looks steady after a few weeks, you can check less frequently. I’d also write down each reading (date, time, reading) in a Google Spreadsheet (more on that in a bit) to see if things fluctuated. Digital Thermometer: I didn’t use this as much as the blood pressure monitor, but for $40, it was a good enough investment to have around to make sure my mom wasn’t running a fever when she felt hot, especially when she was in the middle of chemo and her immune system was significantly weakened.
You’re Going to Search the Internet For Everything. Just Make Sure the Source Is Credible.
Okay, so you got the dreaded news from doctors. You probably pulled out your phone and did a dozen Google searches before the doctor had a foot out the door. Unless you had a lengthy and honest talk with your specialist about the diagnosis, you’re likely craving information. By all means, read, watch, and do what you can to educate yourself, but make sure the source of that information is credible. You’re entering a world where bunk science and marketing schemes run wild, and there are waves of websites that will try to pass themselves off as legit in order to sell you something or make a brand of themselves.
It’s easy to get lost in everything. If you find something promising on a blog or website that you’re unsure of, cross-check that information with a reputable source (like NYTimes.com, American Cancer Society, or university studies) by searching for that same thing there. If it has promise, it will have at least earned a mention in some of these places.
Make an Honest Effort to Manage Food Intake and Quality Early On.
In the six weeks that my mom had to wait to recover from surgery before starting radiation and chemotherapy, she gorged on food (I’d get calls from her at 10 in the morning asking if I wanted anything while she was at Burger King). Her doctors told her to “enjoy” her diet, which meant, “you’re probably going to die soon, so eat the food you want.” The doctors are not entirely wrong or right in this perspective, and the post-diagnosis diet for a GBM patient is a real thing families have to consider once they move from the hospital to the home.
My mom expected that her chemotherapy (Temodar) would make her nauseous to the point where she wouldn’t want to eat, so whatever weight she gained during the previous weeks of recovery would be lost moving forward during treatment. This is true for many chemotherapy patients.
For her, though, the doctors recommended that she stay on steroids (Decadron) throughout the treatment. While she had minor nausea during chemo (again, this is specific to her and may not be true in your experience), she controlled it with anti-nausea medicine. But the immense hunger that the steroids brought could only be quenched through eating. So, after our trips to radiation five days a week during this time, she’d ask to eat out—whether it was fast food, a restaurant, or Jamba Juice.
She gained 50 pounds, developed what cancer patients call “moon face” and “buffalo hump,” and the access weight is now a daily obstacle to her mobility and emotional health. If your loved one’s doctors recommend that they stay on steroids, an influx of weight gain will likely happen as a side effect of the medicine. Don’t beat yourself up when that happens—the hunger that Decadron creates is powerful.
Yet, I do recommend that you try your best to manage food intake and quality early on. Don’t let it run wild. Try to anticipate and lessen the inevitable blow that steroids bring. I am not a health nut, but in a situation like this, a well-balanced diet is more useful than a diet filled with french fries or sugary drinks. If you’re well enough post-surgery, eat foods that will provide energy so that you might feel up to walking around the block twice a day in the weeks ahead. Eat foods rich in protein to promote the feeling of fullness. You may not have long to live, but you may have longer than you or doctors expect. I suggest preparing for the latter.
When Bills Come, Check That Your Insurance Was Contacted First Before Sending Your Money.
Medical bills may come months after the fact. When they do, read them closely and look for charges that show your insurance company was billed, and that the amount the bill shows is your correct responsibility.
This has happened a few times: we’d receive a bill for, say, $430, but when I looked at the charges, I couldn’t find any sign that our insurance company was contacted. I’d then call the clinic’s billing department (they’ll usually have a phone number listed on the statement), and ask if they had my mom’s insurance information. They’d sometimes say that they did have it, but that insurance never responded to their claims—so I would review my mom’s information with them, and we’d find out that a number or letter was missing. They’d resend a claim to the insurance company with the correct info, and we’d get a corrected bill later on. If this happens, save the original statement and write a note on it that says, “incorrect info, new bill coming,” so you know that you took care of it and that don’t confuse the statements when the new one arrives.
Yet, most times when I called, turns out they didn’t have any of our insurance information, so I’d provide it to them over the phone. They’d then send the bill to insurance, and we’d take care of the adjusted one later on.
NOTE: If you’re a caretaker making calls on behalf of a loved one, make sure to make the call while you’re in their presence. Because of HIPAA laws, some billing centers won’t discuss anything with you without having a verbal confirmation from the patient, so if this happens, it will be less frustrating for you if you can just hand the phone over to your loved one for a few moments and get that confirmation than have to call back at a later time.
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.