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.
I had big plans for the start of 2019 involving Zentangle videos, regular website content, and editing my manuscript. But on New Year’s Eve I came down with a horrible bug that turned into a pretty serious infection and a diagnosis of sinobronchitis.
In total, about 7 of us that spent the holidays together at my Mom & Dad’s ended up sick. Initially, my plan was to wait it out, because I was less sick of the bacteria swimming around in various parts of my respiratory system than I was of seeing doctors. But then Dan came down with it–and when he could no longer hear, he said, “That’s it, woman. We’re going to Convenient Care.” It was Day 5 for him, day 11 for me.
Because we both had coughs, we were asked to sport those fancy paper masks. I got some pretty potent antibiotics (that are currently tearing up my digestive tract, yay!) and have been taking them since Thursday. I think I am feeling better, but it’s hard to tell. Recovery is not linear.
So that’s 15 days of being sick, which, sadly, is several years shy of my record. But terrible nonetheless.
Anyway, I will get back to posting videos and my #FaceADay stuff on Instagram again. I swear. I just have no idea when. Hope your 2019 is off to a much better start!
It’s getting easier and easier to pedal for 90 minutes a day in 30-minute increments. Next goal: adding some new exercise that requires me to use muscles in my torso, back, and shoulders.
My permanent disability parking placard came in the mail this weekend. Getting it is bittersweet, because it’s so helpful to have. But also, I don’t really want to need one. Holding the placard in my hand forced me to reflect on the last year or so, and it bummed me out a little.
So I thought I’d try to focus on a thing I can still do in spite of my tumor and last year’s biopsy, radiation, and months of chemotherapy. Unfortunately for my waistline that thing is bake cake.
This story really begins last Wednesday on Dan’s birthday. I made him Nigella’s Chocolate Guinness Cake* (with a bottle of New Glarus Coffee Stout from his stash of special birthday beers instead of Guinness). Making him this cake is a birthday tradition. It’s really dense and really moist, but it’s not really sweet. It’s sooooo delicious.
We didn’t have a cake stand, so I plopped it on a pizza plate and later covered the leftovers with an inverted bowl from our salad spinner.
Well, a sweet friend of ours, Dawn, couldn’t let us go on living life without a proper cake stand and decided to gift us one. I immediately started looking for another cake to bake and settled on this Pistachio Pudding Cake**.
I started wobbling around the kitchen, and it baked while severe storms moved through our area. I was pleased with how it turned out.
Here it is again, pictured with Dan’s beers. That’s just coincidence, I don’t necessarily recommended pairing beer and cake. (Yeah, the cake is made with three boxes of instant pudding so it’s got that perfectly unnatural green tint and semi-homemade flair.)
Both cakes are delicious.
* The frosting is store bought. We weren’t in the mood for cream cheese, and opted for a buttercream instead.
** Again, we skipped the cream cheese frosting. Instead I iced it with a powdered sugar, water, and orange zest drizzle. Also, I had to add an extra 1/2 cup of milk to this cake batter. It was so thick without it, my hand mixer couldn’t deal.
