My story: my partner Caleb was diagnosed with a benign brain tumour at Christmas 2000 (six months before he and I met); since then he has dealt with daily bromocriptine side effects as well as some other strange, unexplained symptoms. We cried so many times after horrible doctor's appointments in which we found out nothing and felt like these people would never help.
But he visited a new endocrinologist last week, and this new guy seems great. He listens, he remembers details, and he actually thinks he may have a diagnosis, a reason for all the weird things my love has been going through. This is great news.
The not-so-great news is that it's likely Cushing's disease, which is a rare disorder often caused by pituitary tumours, just like Cal's. It's eventually fatal, but it can be cured--by a lengthy, risky, terrifying surgery involving entering his brain through his nasal cavity and removing the tumour, which very well could grow back rapidly. The recovery time for this would be quite long, as well.
We're reeling. I can't stand watching him struggle through this, but I feel so helpless; all I can offer is my love, myself. I can't take away his pain, his worry, his fear. And I have this pain and worry and fear of my own. Life feels muted, distant.
I welcome comments and posts from anyone who wishes to contribute to this community. I would love to make this a supportive environment where we can come together to heal ourselves.