It's hard to believe that tomorrow will be a whole year since my BLA. I definitely think my expectations were high, and no, life post-op has not necessarily met those expectations. Despite the many speed bumps (and brick walls), I still feel as though I made the right decision. (Keep an eye out for upcoming posts about making tough medical decisions!)
To summarize the past year, I thought a pro-con-pro session was in order. (Thank you, Tri Delta for teaching me this important life skill of starting and ending on positives)
- I have lost 42lbs, bringing me back to my pre-pituitary surgery weight. About 70 more to go!
- I got into school!
- NO OVERNIGHT HOSPITALIZATIONS!!!!!!
- I finally got to visit my bff and biggest supporter in Brooklyn - 3 apartments and almost 3 years after he moved to NYC
- I still don't feel "well". I have a hard time doing anything strenuous, I am still dealing with crazy swelling issues, I don't feel anywhere close to what I would imagine a normal 25 year old should feel like, and don't know if I will ever have the luxury of feeling "normal".
- I couldn't go to school. Biggest disappointment ever - probably harder to deal with than all of the health issues over the past few years. I thought I was finally going to be moving on with my life and have some positive changes coming but I guess it wasn't meant to be right now.
- I still don't feel like I have any doctors looking out for me. I have been the one and only person to diagnose myself each and every time there has been something wrong. Yes, I respect and need their advice, lab test ordering, and prescription writing capabilities but I still feel like I am in this alone.
- Watching friends from our support groups go through similar and worse things makes me so upset for the same reasons. We are all in this together, but most of us without 100% support from the medical community.
- I have learned more about adrenal glands, adrenal insufficiency, thyroid glands, and pituitary disorders than I could have ever learned in a classroom. I have learned what it feels like to be a patient when doctors have no answers. Hopefully all of this will serve me well someday as a physician.
- I am sitting here, well enough to blog about my experiences. Many are not so lucky. A little over a year ago, a radiation oncologist told me I would be foolish to wait 2-3 years to see if radiation would kill my tumor. He was afraid Cushing's would kill me before then. Thankfully, they had other options and here I am today!
So overall, no, I am not feeling great and no, I do not think this is a magical surgery that can cure everyone of Cushing's. It was a trade off, but so far, I think I have done pretty well and can only hope to improve more over the next year.
August 2010 (weeks before BLA)
Summer 2011 (I have decided I'm ready for more pictures in my life now - I have almost NONE from the last few years! Until then, these are what I'm left with.)