Good News, Bad News: An Update

I successfully made it to Tampa and back today solo, with respiratory infection in tow. Today’s trip would not have been possible without Cortef as there were some surprises. The trip there was uneventful, enjoyable even, despite it being before dawn.

Good and bad news at the appointment. Good news, they found the pheochromocytoma causing my symptoms. The obvious bad news is this means I have a confirmed active pheochromocytoma. Not really what I wanted, but at least I don’t feel like a crazy person anymore with unexplained episodes.

Bad news, they also found a paraspinal mass and a “suspicious liver lesion” neither of which I was expecting. Now we have to figure out what these are and what to do about them, as well as the nodule in my right lung we already knew about. On the brightside, all of these “issues” as my doctor calls them, are “stable” meaning growth is minimal and nothing seems to be growing aggressively.

I have an appointment with an endocrine surgeon on May 31, and hopefully we’ll get a plan of action going.

I did ask him about the HC clearance test to get my cortisol pump set up.  I told him about my unexplained increased steroid requirement and the symptoms I encounter. He kept asking what my regular dose was and I admitted I don’t have a regular dose anymore. I told him I’ve always needed at least double the standard dose and even then that is barely surviving. He thinks the “issues” we discovered could be causing or at least contributing to my increased steroid requirement. He is going to do his best to help me with this as well.

I feel completely exhausted mentally and physically, but I can’t seem to sleep. On the drive home the only thing on my mind was “pheo.” I kept going back and forth between “why” and “it’s not so bad.” I suddenly feel like nothing is important anymore. I’m just going through the surgery motions again. An odd deja vu feeling that puts my stomach in knots. This is my 4th round with pheos. This will be the first time with adrenal insufficiency  though, and it’s a scary thought.


6 thoughts on “Good News, Bad News: An Update

  1. I can’t answer why, and well.. we don’t know if it’ll be “so bad”, what I can say is that I’ll be here, cupcakes too. I didn’t know you when I went through this part, but we have each other now 💛 and all of the carbs, and the kelp. It’s fine.

    Liked by 1 person

    • I’ll be okay once the news has had more time to sink in. You’re welcome here anytime, but Tim will need help when I go for surgery. We don’t know when that will be yet, but we will keep you updated.


    • There is a mass growing where my right adrenal used to be. This, my doctors are confident is a reoccurent pheo. The other lesions in my right lung, right paraspinal area, and liver- we are not sure what these are yet. This is all very recent information for me. They could also be pheos, MTC mets, or if I’m really lucky maybe they’re nothing to be concerned with at all? (My fingers are crossed as I get ready for more testing.)


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