From August 22, 2018

A rough and overwhelming week

Journal entry by Abigail Johnston — 

Liam started kindergarten this week and it was amazing and nostalgic and fun and I had a hard time focusing. So many other things going on but I’m still doing my best to stay focused on the present and supporting him through this new transition. We love love love his new school and I’m working on getting involved and not getting TOO involved.

Anyway, the biggest fiasco this week was finding out my insurance company denied the PET scan scheduled for Friday. I HATE INSURANCE COMPANIES. With my tumor markers coming up since January, it’s so important to know what’s going on and the PET scan is the gold standard (according to my medical oncologist). I found out in a weird way since the patient seems to always be the last to know important stuff. As soon as I did find out, I got on the phone. Fast forward to this afternoon and I learned that my PET scan got approved!! After a few hours on the phone and dealing with 22 different people, I got the insurance company to do a separate peer to peer with my medical oncologist when I found out the first one was a family medicine doctor 5 years out of school (she was the one responsible for the denial). My medical oncologist is a 30 year specialist in breast cancer. Clearly not her peer. My doctor said it’s the first time that’s ever happened in 30 years, that the insurance company reversed their decision. I also might have read my entire health insurance policy and pointed out at least 10 violations and made sure they knew I’m a lawyer. A great outcome but the cost in time and energy is incalculable. I need to live my life and spend time with my kids, not fight with insurance companies. I HATE INSURANCE COMPANIES. I’m not sure I’ve been this furious since I started treatment. The gall of them. Anyway, hopefully they got the message this time and the next PET won’t be such a fight.

In other news, my neuropsychological evaluation demonstrated that I’m operating at a 20 Point IQ deficit due to the affects on my brain from chemo. That’s quite an impact. Good news is that I qualify for cognitive therapy. I have an evaluation next week and I expect to be in treatment for several months. The outcomes they are seeing from this therapy, basically targeted brain games, is promising. The neurologist thinks that I could recover most if not all of the deficit.

Finally, I’ve been having some crazy intense migraines. Days and days of excruciating pain and nausea that the medication doesn’t touch. I’ve always had migraines but nothing that worked in the past has been helping. The PET will help to know whether I’m dealing with mets to my brain (rather rare). I also will see a neurologist who specializes in migraines the first week of September. He doesn’t take insurance and his appointments are 4 hours long. I’m hopeful that adding his input will help.

So, there you have it. A difficult several weeks and why I can’t seem to get much done nowadays besides getting to doctors and driving the boys to school.

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