BRAIN TUMOR TREATMENT

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Experience:

Getting Organized

After Bryan's diagnosis, we were both incredibly overwhelmed. Not just by the news, which alone was hard to swallow, but by the endless stack of paperwork and bottles of prescription pills we were beginning to accumulate.

We had a new patient packet from Cedars. We had business cards, registration paperwork, and print-outs of medication lists from three different doctors. We had prescription slips for Prilosec (anti-acid),

Dexamethazone/Decadron (steroid) and Lovaza (fish oil), soon to be followed by prescriptions for Zofran (anti-nausea) and Temodar (chemotherapy pills). We had insurance paperwork from Aetna. We had CD copies of Bryan's original MRI and PET-Scan (full body scan). The list goes on and on.

We needed to get organized, and fast. Otherwise, the paperwork would pile up and become a certified disaster area. Not to mention, we couldn't risk losing track of the twelve pills Bryan was taking at different times of the day. Talk about precious cargo.

Bryan and I employed two systems to organize the paperwork and the pills. It's worked like a charm and I cannot emphasize how important this is, especially if you want to maintain your sanity during this tough process.

Here's how Bryan and I stay organized.

Organizing Paperwork

We bought an oversized 3-ring binder. It was bright orange, which made sure we wouldn't lose or forget it. It had interior pockets and zippered pouches, perfect for storing CD cases and small prescription slips. And it even zipped shut, so there was no risk of critical paperwork falling out.
Inside the binder, we put the following:

1. A 70-page notebook. This has been priceless, because when Bryan and I go to his appointments, Bryan sometimes finds himself overwhelmed and unable to remember what the doctor said, prescribed, etc. I have a great memory, but there are a lot of details and schedules to remember that I definitely do not want to forget. To remove any burden or unnecessary stress from Bryan, I created lists of questions and took notes in this notebook during every appointment. That way, even a few months later I could refer back to the notes and remind myself of important details, symptom changes, etc.

2. Plastic business card holder sheets. We keep copies of Bryan's insurance card and all fourteen doctor, nurse, and physician assistant cards in them so they’re easily accessible at a moment's notice. This is in addition to entering each doctor's name and phone number in both Bryan's and my cell phone so we can make and return important calls when we're out.

3. Clear plastic dividers. We created four different sections in the binder: "Test Results," "Medication," "Insurance Forms" and "Bills." We hole-punch and catalog all test result, medication, insurance and bill-related paperwork in their respective sections. We organize them by date so we can figure out where and when we received each piece of paperwork.

4. Plastic folders. We have two plastic folders behind the plastic dividers, one for receipts (endless co-pay and pharmacy receipts, Cedars-Sinai Cancer Center parking receipts, etc.) and another for miscellaneous paperwork. For example, we just applied for a handicapped parking placard while Bryan recovers from radiation, so we placed a copy of our application in the "Miscellaneous" folder.

Organizing Prescription Pills

Beyond the onslaught of paperwork, there are the pills.

Within two weeks of Bryan's diagnosis, he was taking a total of twelve prescription and supplement pills per day. The most important issue was, to remember which pills he had to take at 8am, 12pm, 3pm and 10pm. A lot of the pills look alike, as do the pill bottles, so we wanted a system that would be foolproof.

Enter the Jumbo Pill Organizer.

It has Monday-Sunday columns broken up by daypart. In our case, the pillbox is organized by "Morning," "Noon," "Night" and "After Dinner." We arrange Bryan's pills for the week on every Sunday night, so he knows when to take which pill. It's especially helpful if I'm not home, as I am the "Pill Sergeant" and keep Bryan on track.

Aside from the Jumbo Pill Organizer, we got two individual, travel pillboxes. They are great for keeping Bryan's Temodar separated from other pills if and when we're traveling. Or if we have an overnight trip, he can put all his pills in the tiny box and throw it into his toiletry case. It's a great, yet simple way to organize one or two day’s worth of pills.
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