Life after brain surgery

When you all read my last post, I was two days post-operation. My remission for Cushing’s disease is going as well as it possibly can. I am finally regaining some control of my life. It isn’t all sunshine and rainbows, but things have improved significantly.

I woke up four separate times in the recovery room, but I finally felt better. I was freezing, shaking, confused and a little scared. I remember looking at the time and it was 11:36am. My surgery started around 8:30am and doctors said it would take three to four hours. I was in the ICU surrounded by my family. My surgery was successful and doctors were able to remove the whole tumour – I was put at ease.

Yes, I felt better, even under so much anesthesia. From what I’ve gathered in my Cushing’s research, once the tumour is no longer putting pressure on the pituitary gland (this disease can also be caused by a tumour in the adrenal glands), then there is no reason for the body to be producing excess cortisol. Now, the body enters withdrawal mode. That means patients need to take a pill, Cortef, or hydrocortisone, to help create cortisol. Most patients have their levels go down close to 0, immediately, and without something to help create cortisol, patients are at risk of death. Cortisol should only be elevated in moments of fight or flight, which are usually temporary.

I was in the hospital for five days. I lost 11 pounds in excess water weight. I became a pro at learning how the IV machines, heart monitors and more work. I was stuck in ICU with two elderly stroke patients, which was traumatizing. When one of the patients left to go to another room, his spot was replaced by a young woman with a brain aneurysm. She was in so much pain that she would have moments of straight crying, screaming and vomiting. Without discrediting anything I went through, these three people had such terrible situations and in that moment, I realized even more how truly lucky I was to be there in my bed, not needing emergency help after my surgery and that everything seemed to be going well. That is one thing Cushing’s has taught me – to never take anything for granted, especially health.

May 27 marked five-months post-op. I have come such a long way and still have so much more to go. This period of time is all considered remission and each Cushing’s disease patient heals at a different rate. It all depends on age, prior health issues (if any) and how high or low the risk is of the tumour returning. In my case, my chances are small. I had a tumour below 6mm.

So, so far, so good. My levels having been normalizing and I’m sleeping better. The only paint that remains are in my joints, from gaining weight during my Cushing’s journey. Now, I am often able to go and run errands for two hours at most, until I begin to get incredibly weak and exhausted. Still, I’ve come a long way. Though I physically look much better, but I’m not fully where I could be. It will take time and patience is key in this process.

5 Month Post-op
January 27, 2017 -> June 22, 2017.

I’m not yet well enough to go back to a physically demanding job, so I have been doing some network marketing, with some freelancing on the side. Additionally, I am also focusing on becoming a Registered Nutritionist. These are positive additions to my life, but even these are too much for me to handle, some days. This remission process is a complete rollercoaster, as I never know how I will wake up feeling. However, I’m happy I’m here.

If there is anything I can say in terms of advice for all of you after all of this, it is that I need you to promise yourself to LIVE. I know that life is tough and the reality for people is that health is never perfect, trying to make ends meet is always difficult and sometimes toxic people, places and things are hard to escape. But in between those moments of stress, when you’re able to find a minute alone, do something for YOU. It could be as small as buying a face mask and laying down for 10-15 minuets, relaxing. It could be reading a chapter of a book you’re enjoying. It could be getting a fancy latte. No matter what makes you feel good, even if it’s 10-20 minutes a day, it’s all worth it. That short period of time invested in y-o-u can make all of the difference in your overall wellness, health and happiness.

I would like to take this opportunity to also thank Leviana for allowing me to share my story on her platform. I would also like to thank those who have read my posts and learned about Cushing’s disease, through my perspective. This disease is very complex and there is still research in the works, because it continues to be a confusing, fatal disease that attacks the body in so many different ways. The disease itself causes even more issues in addition to its own symptoms – like diabetes, high blood pressure, and so on. If anyone would ever like to know more, I welcome questions with open arms. You can reach me at crushcushings@gmail.com

If you are going through something tough yourself, keep fighting. It’s not easy but you’re an absolute warrior and you should be proud of yourself. Not everyone could live life and kick a disease’s butt at the same time. Sending everyone love.

– Catarina

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