Cushing’s at 5 weeks post op

(Disclaimer: Hi! Just a reminder, this is essential a diary/journal-type entry in my Cushing’s Disease recovery. It contains thoughts, complaints, pictures, etc. Cushing’s is rare and affects so few. For this reason, I wanted to put my journey out in hopes of helping others who might be going through this as well. I also do very little revision/editing to keep it authentic.)

The last two weeks have been about perspective and patience and strengthening my spirit in 2 Corinthians 4:13-18. It’s about the gratitude, the witness of a strong spirit despite physical suffering, and faith.

So we do not lose heart. Though our outer self is wasting away, our inner self is being renewed day by day… as we look not to the things that are seen but to the things that are unseen. For the things that are seen are transient, but the things that are unseen are eternal.

2 Corinthians 4:16-18

Perspective practice #1: We are five and a half weeks into the remission/recovery phase of the surgery. Weight loss is still avoiding me, but I haven’t gained. (by this time, it could have been possible for me to gain another 30, 50, or 70 pounds). I think I see a difference in my face. I can see a more defined jawline coming out. What do you think? (I HATE smartphone cameras and selfies. I do much better at photos with a SLR.)

Here’s my face, but also some skin on my stomach where I had what I thought were stretchmarks, but it’s purple lines that show up as a result of the tumor.

These are my pre surgery/in hospital post surgery photos of my face and my skin on my stomach.

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face six weeks2

skin pre surgery

skin at 6 weeks

Perspective practice #2: We saw the ENT on Wednesday. The sinus cavity and nasal passages look good. She says it’s healing nicely. She cleaned out more packing, estimating there’s only about 5% left up there. I am breathing better than prior to surgery and the sinus-type headaches have stopped.

Perspective #3: I’m getting to try out what it’s like to need and use the emergency dosing of hydrocortisone while still restricted on my activity level/work. This whole remission/recovery/regulation stuff seems like it could be more exact and efficient. So I had some stressors (Sick dog, news that Chris will need another stent in his pancreas, ENT follow up, sinus infection, tornado warning/bad weather) this week.

Perspective #4: While the fatigue has continued, its affects are wearing me out more. So, I make lists. Lists make me feel like my good ideas and intentions are active members of my family. Here are two from the last two weeks:

Things I still haven’t had enough energy to do: church, grocery shop, go for a walk around the block, work, any sort of project that requires sustained energy/focus, pull out the summer clothes and sort through them, and do any sort of spring cleaning (this may be the biggest disappointment out of them all).

Things I was able to do this week: eat out at Panera with my family, go for a ride with my parents around Lake Jacomo and Blue Springs Lake to enjoy the red bud trees and sunny warm weather, complete reading two manuscripts I am editing, finish reading two books, water my houseplants, sit outside on our patio and read, make meatballs for dinner one night, and make it to and from a doctor’s appointment.

This week marked that six-week post op when supposedly things flip. My physician’s assistant from the neuro office says she has had many patients say that at week six, it was like a switch was turned on and they felt much better. I would say I had moments where I felt somewhat normal (if I even know what that is), but I still have days where I cannot get out of bed and sleep most of the morning.

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