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.
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.
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.
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.