I had a new message in my patient portal at Barnes-Jewish Hospital / Siteman Cancer Center today, and since I hadn’t recently completed any tests or had any doctor’s visits, I was curious. I opened it to find this message:

Hi Emily

I have been working on your paperwork for [REDACTED], long term disability paperwork and had a couple questions for you. From reading your chart, it appears the last time we saw you, you were doing well and are not currently in treatment. What kind of work do you do? What kind of symptoms are you having that are causing you difficulty at work? Do you have any limitations to your daily activities? Also, do you have a new phone number? Both the number we had for you and for your emergency contact are not working.

Thanks,

[REDACTED] , RN

So, I rambled a reply:

I don’t know what doing well means. I can walk on my own, but the brain tumor can’t be removed and it limits my balance and mobility. I have frequent migraines, am unable to drive due to permanent dizziness/vertigo/nystagmus, and have chronic fatigue because where the tumor sits on my brain stem it interferes with autonomic functions. I am not dying, so that’s good. But I’m permanently disabled because the tumor cannot be surgically removed due to its location. My chemo therapy and radiation are done, but they didn’t cure me. I used to be a technical writer for a mathematics software company. Fatigue limits me greatly from doing the physical labor required just to get to a job. If I did do a job, I would literally not have the energy left to do basic things like load the dishwasher, cook a meal, take a shower, etc. I often have to pick one or two activities I can accomplish for the day and rely on my husband to pick up the slack. This is just what the doctors call my “new normal”. So, I’m not declining, but I haven’t gained back all of the abilities that the tumor deprived me of. Our phone numbers haven’t changed. Not sure what the issue is there.

My cell phone: [REDACTED]. My husband’s (Dan [REDACTED]) cell phone: [REDACTED].

Hope this is helpful, sorry if the response seems terse. I’ve talked to
[REDACTED] about this already. They only have like 5 months left to pay on the policy, and it’s an inoperable brain tumor. It kind of stresses me out. They don’t even have to pay the policy’s full 60% (or whatever the number is) of my former income because they subtract what I get from SSDI. Gah, sorry. I know this is not on you. Insurance stuff just makes my blood boil.

It probably doesn’t help my mood any that I am still recovering from more than two weeks of being muggle sick on top of the brain cancer. The antibiotics are helping, but they are strong and my gut is weak. I’ve been spending a lot of time in the bathroom despite downing multiple glasses of Tropicana probiotic juice several times a day. It also doesn’t help that losing this income in May weighs heavily on me. So much so that last night I dreamed we had to give up our house and move to a freaking dump.

I just want the insurer, WHO I FREAKIN’ PAID FOR THE POLICY, to fulfill their end of the agreement for what little time is left on it.