After Visit Summaries

In light of recent life circumstances, one of my new favorite hobbies is reading my "after visit summaries." These are the summaries that practitioners provide after I have an appointment with them. Given the number of appointments I've had in recent months, I could probably fill an inch-thick binder with printed copies. They provide basic educational info, but then the practitioner also provides customized notes of their clinical observations. It’s these notes I’m most curious about. What did the provider think was worth noting about our interaction? What stood out to them as worth documenting? For instance, here’s a snippet of one of my latest after visit summaries from one of my providers:

Courtney presented to the clinic today with her parents. She had a breakthrough seizure on 5/21/2024, after which one medication was increased and a second medication was continued on 750 mg po BID. She feels that she has more spasm of her LLE. She continued to have LUE weakness which is improving slowly with PT/OT. She had difficulty focusing her vision for sometime on an object or a person. She had more depression and anxiety. She denied headache, nausea, speech difficulty or visual changes.

I decided in light of these summaries, I thought it would be appropriate to write my own "after visit summary" after having an encounter with my own body. Basically, a note from me to me about my own clinical observations of my body. Here’s what I would say as a summary, complete with appropriately corresponding acronyms:

Courtney is a 39 y.o. right-handed female, who presented to the hospital on 2/3/2024 with new onset witnessed seizure, and found to have a brain mass. She now sleeps under the watchful eye of a baby monitor camera because her body can't be trusted to be left alone. It appears her left arm is a bit of a honey badger, which is to say it doesn’t care most of the time. IYKYK. And her left leg is a bit of a baby honey badger, which is to also say it doesn’t care, but it at least does a better job at hiding its obnoxious behavior and has the decency to at least exhibit some good manners on occasion.   

Her eyebrows seem to be getting more exercise than the rest of her body because her brain thinks that by raising her eyebrows, they will be able to assist in raising her honey badger of a left arm. This, of course, doesn’t work. LOL

Patient routinely appears as a sobbing hot mess to appointments. SMH.

Her seizures are as unpredictable as Steamboat Geyser in Yellowstone National Park. 

It also seems she's made some questionable fashion choices lately, which maybe isn’t anything new, but at the very least she maybe should not wear blue and white floral leggings again with the red and white plaid button up shirt. OOTD. The goal of her craniotomy was for the surgeon to remove her tumor, not her ability to discern what it takes to look presentable in public. She also should not be trusted with sharp objects or priceless fragile family heirlooms. Turns out honey badger of an arm really is not helpful when wielding a knife.

She also looks like a skunk Chia Pet. 

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Functional updates

I'll try to carve out space in each post to provide updates on where I am in the process. So, if you're just here for the nuts and bolts, in the future you can slide straight here to the bottom and skip my idle wanderings above.

This last week felt like an all-out slugfest. I had rehab to start the week, and then I end up having another seizure Tuesday evening. On Wednesday, I had a follow up appointment with the neuro-oncologist to discuss both the seizures and how to manage them, and next steps for chemo and radiation. I had to sign the consent to treat forms, agreeing to undergo chemo, and I felt like I was signing my life away. I was crying so hard I could barely see the line where I was supposed to sign. On Thursday morning, I had a consultation with radiation oncology. She was the bright spot in the week. A really lovely doctor. And to our delight and surprise and relief, a family member of ours will be my radiation nurse. Just nice to have a comforting face amid the chaos. So by the time I got to yesterday, I really did not feel like leaving bed. I can tell my stress levels are through the roof. Anxiety is wreaking havoc, causing so many symptoms that it’s hard to tell what’s a side effect of medication versus residual effect from seizures versus stress and anxiety. 

Emotionally, it has just been an incredibly overwhelming week. As much as I was averse to it, the neuro-oncologist did recommend I take an anti-depressant medication. I’ve slept horribly the last two nights, which I would chalk up to anxiety. My body is so tense all the time. I’ve learned over the years that your body will always tattle on you eventually, so even if you don’t feel that stressed mentally, it will show up in some form or fashion somewhere else in your body, which is what I think is happening here. I continue to have problems with my vision, and my left leg is always restless, and I think a lot of it is just anxiety playing out across systems. While I was reluctant to introduce yet another layer of meds, I’m hopeful this medication will bring some relief and support to get my body to calm down amid all the stress and chaos. I'm willing to concede when it's time to wave the white flag. I am not Wonder Woman.

I don't have an exact start date, but chemo and radiation will likely start by mid-June. I will have radiation every day, five days a week for six weeks for a total of 30 fractions. On top of that, I will take chemo (mine is a pill) for 7 days a week for 6 weeks. Only time will tell how my body responds to all of this, but it is a deep source of anxiety the closer I get to the start of it. Your continued prayers for supernatural peace, calm, and joy are appreciated.