Patience. n. the capacity to accept or tolerate delay, trouble, or suffering without getting angry or upset.
I am not patient. At least not in regard to this situation. I am not without upset. I am trying hard to be patient but I am not succeeding.
It is funny how in some aspects of our lives we can implement certain virtues and in other areas, not so much.
I am patient when I am with my patients at work. I am patient in line at the grocery store. I am patient at work when things don’t go 100% the way I want them to. I am the most patient with our cat who likes to occasionally pee on things and everyone else in the house has said to get rid of him.
I am not patient with my own medical care and the lack of attention to detail or people’s inability to do what they say they will do.
I have tried hard over the last year to remember when I have “dropped the ball” and tried to have patience, but this week I am failing. Frankly it feels like a repeat of last year, the week before Christmas. So note to self for future, never have scans done around the holidays. Apparently I did not learn this lesson last year (insert eye-roll here).
I had my scan last week on Wednesday. I was told to call Friday to get my results. I called, the doctor was not in. A nurse called me and said the doctor told me to tell you your scan was stable. I asked her “does stable mean no change or minimal change”? She said “stable means that whatever they saw last time is exactly what they saw this time, no change”.
Awesome news! I texted all my family and friends. “Stable, no change. Merry Christmas to me”! ❤️🎄
Monday I drove to pickup a hard copy of the report. Except when I read it it said things like “compared to the prior study, slightly increased profusion”, “morphology of the enhanced portion of the lesion has changed”, “findings suggest there has been evolution of hemorrhagic material within this lesion”.
The other thing on the report that sent me reeling was they changed my differential diagnosis. When you cannot biopsy a tumor you are left to guess what you are dealing with. Hence a differential diagnosis. Up to this point all the doctors I have seen have suspected a subependymoma, which if you are going to get a brain tumor this is absolutely the one you want! My report now states that subependymoma is considered less likely with three other types listed as more likely. One of the types listed is cancerous, the other two are benign but would still need surgical removal because they grow, unlike a subependymoma which doesn’t grow and doesn’t cause symptoms.
You might know this about me but I am not a radiologist, nor a neuro oncologist. So I have no idea what any of this means (aside from what internet searches have told me) but what I do know for certain is that it means there absolutely has been a change.
So I immediately call the doctor. Guess who is on vacation until Jan 4th. You guessed it! And guess who apparently doesn’t have anyone covering for him. So a nasty nurse practitioner spoke with me and made me feel like a jerk for having the audacity to call and ask for answers. What she did reveal in our exchange was that the doctor left for vacation Thursday night and my report from the radiologist had not come in yet, that arrived Friday morning. So he had looked at the images of the MRI but had not read the report before he called the scan “stable”.
This is where the concept of patience comes into play. I was not very patient with said nurse practitioner. I was trying to be patient, but my expression of patience in this situation does not come as as very patient, it more looks like a panther who is ready to claw at your eyes.
This is literally the exact same scenario as last year. Nurses calling me to tell me I have a brain tumor, not being able to ask questions, being dismissed as though this is no big deal.
I need to work on this, I know its “my work”. However what I keep coming back to in my mind is how I have good health insurance, I know how to self advocate, I know how to read research and Yet I still feel helpless in our medical care system. That’s not right.
I called Columbia and have a review of my scan with them on Jan 5th. Until then I have no idea what is going on inside my head. I contemplated calling the doctor back and demanding that someone else look at my scan but I decided that this can be another lesson in patience. I will wait.
I will enjoy the holidays with my family, focus on what I am grateful for, and just wait, patiently.