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.

Countdown: 2 Days

At 6:00 AM Wednesday morning, I will be rolling up to the sliding doors inside the parking garage attached to the neuroscience’s institute. I’m having near brain surgery. They will do this transsphenoidal procedure to remove a tumor or maybe it’s two from my pituitary gland. “Near brain surgery” echos in my head at random moments throughout my days. Reverberating from the walls of my skull.

Time flies. I didn’t expect it to.

We are all anxious at the unknown. It seems like I just got put on restrictions and FMLA due to a new injury in my hip. It felt like the surgery would never get here. We had to wait to schedule it because my doctor was going to China. Good reason to wait. We definitely didn’t want to have the surgery right before he left the country, so March 28 seemed like an eternity.

In the meantime, I had more tests done and pre-surgery appointments with doctors. The doctors educated us and armed us with what to expect, but I try to keep my distance from it, so I don’t start playing the what-if/worst-case scenario game (for my This Is Us watchers). But now, it’s only 5 days away. I have to pack a hospital bag. Plan for dog-sitting, kid’s lunches, bills are paid and listed where Chris can find them, passwords, account numbers are updated. These last two or three days, I have had to play the what-if I am not able to take back up all of my responsibilities at home. Is Chris prepared to do those things?

What has worried me more is my kids making it through. Yesterday I got my answer for both kids. Each answer coming in one-one-conversations. I didn’t push, I waited and in the right time, they both came to me and opened up. And the concerns, thus the plan for them to deal with their fears and anxiety is different for each of them.

My daughter has been anxious about the surgery, because she “doesn’t want me to change.” When we asked her what changes she thought would be bad, she couldn’t think of any. A couple of days later, I asked again. I asked her to think about and write down or let us know what change she was anticipating that would be negative. I just needed to give her more time and also permission to explore those thoughts. She needed a person who would be there, if they got to be too much.

When you hear from your kid that the deterioration she has watched you go through for two years say, “I don’t want you to change”, you wonder what she thinks is going to happen. Is she scared of me dying? Being worse off than I am now with walking/caring for them and myself physically? What could possibly outweigh getting rid of chronic pain, stopping the brittle bones from progressing, and losing weight?

Chris and I have been vigilant about not discussing most of my anxieties in front of the kids, so we were confused by what she could want to stay the same. Then she wrote me this letter. Here’s a snip of the first page.

This child has a heart of compassion, love, and creativity that never stops surprising. (Plus I had to add the picture, because she proofread it and revised it before giving it to me. No final copy, but that’s okay. Her mom must be a writer and an ELA teacher…I was proud of her. I think her grandma, also a writer, would be, too.)

Throughout January and February, I was processing through having an actual reason for brittle bones, fractures and the rest of my diseases that are actually symptoms of Cushing’s Disease. Allyson is hypersensitive to other’s needs and emotions., yet my “stuff” didn’t distract her. As I was processing, she managed her own anxiety, started public school for half days, and, then to our surprise, won the January Optimist Club 5th grade Character Trait Student of the Month.

This girl is capable of achieving everything she wants to. Last fall, she really wanted to enter the Reflection’s contest at school. I was again skeptical. I know how talented she is in creating art (I could brag on it and post pictures, but that’s for another day’s reflection.) When she brought the contest information and application to us, I tried to help her think through what she could create that would relate to the year’s theme of “Within Reach”. I felt our discussions were unsuccessful. It was like I was speaking French and she was using American Sign Language. We could not come to common understanding. I didn’t really encourage her at that point. I was frustrated. I didn’t want her to get hurt by submitting something that wasn’t on theme. I didn’t want her to bomb. Her art is so good, I didn’t want to see her discouraged from it.

But in my release of the process, she made something with glitter gel pens that won her 2nd place for visual arts in the Special Artists category at her elementary school. Her picture went to the state level to compete.

This past week, she received a letter letting her know that her artwork was selected to receive Honorable Mention at state level for visual arts in the Special Artist category. (That’s sixth place out of all of the submissions from the entire state of Missouri!) It’s worth repeating: This girl is capable of anything. When I reflected on these things from the last three months, I recognized how her concept of time is a gift. Yes, it still gets in the way of her having an understanding of how she relates to the passing of time. It is a tool for her in using her gifts. It makes her hypersensitive to passing of time and the need for extra supports in using her time/understanding how her day should/could go. What I’ve discovered through her accomplishments and living life is this: Time is relative and is not an obstacle to accomplishing something you want to do, try, or learn.

Time flies. Time stood still. Time is on our side.