January 27th, 2017, 9am. That’s the day and time I had transsphenoidal surgery to remove the benign tumour from the base of my pituitary gland in my brain. Leading up to the day, I consistently told myself, if I had to choose a day to panic, to only panic the day of the surgery, but I really didn’t have a reason to be. I was in good hands. Anyone who knows me knows I have panic attacks quite easily. Surprisingly, I didn’t have a single panic attack and felt a couple of moments of it coming on, but quickly came back to reality.
Around 8:45am, the nurse came from the operating room to come get me and walk me to the room. I hugged my mom good-bye and held back tears, trying to be as brave as I could possibly be. I had been wanting this surgery for almost half a year and I was finally getting it. “The worst part of this all will happen while I am asleep. I won’t know anything.” I got onto the operating table, was asked a couple of questions and introduced to a couple of nurses and before I knew it, they had me breathing with a mask and I was out before I counted to 3. I woke up what felt like a few minuets later to a nurse in the recovery unit introducing herself as Jean and me asking her if me shaking was normal. I apparently asked her this 5 times because I d remember at one point her telling me, “My dear child, you’ve asked me this 5 times. You are fine, I promise!”
I can’t really remember what else happened that day except that my family and Eric came to see. They told me it was successful and the tumour was fully removed. Some point between then and the next day, I just remember throwing up all the blood that fell into my stomach and then waking up to get my vitals checked and blood drawn. My neurosurgeon, Dr. Zadeh, came to see me a couple of times that weekend, as well. The first 3 days after the surgery are a big blur but I just remember being in pain and having nausea.
I was stuck in the hospital for 5 days and those were the longest 5 days I’ve ever felt. It was lonely and scary. I was stuck in the neuro-ward with mostly elderly people who were really sick, close to death or mentally not there. I saw and heard things that aren’t easy for anyone to witness. The day I was discharged, I cried thinking they weren’t going to let me go because my cortisol went above 250. It was almost 400, but my body was saying otherwise. I was so sick that day. Weak, tired, and unable to eat.
I had 2 nurses that day. My student nurse took a walk in the hospital with me and calmed me down after she found me crying in my bed. When we got back, my other nurse said she had spoken to my resident doctor working with Dr. Zadeh and he gave me the green light to go home. Of course I cried more because I was so happy to go home. I fell asleep again when the endocrinologist came to see me. He decided to go the clinical route (where doctors go by the symptoms of the patients, and not the lab results. Lab results don’t always tell the whole story) and decided to send me home with hydrocortisone, the steroid replacement that will help me make cortisol, even though my lab results for that day showed super high levels. He had wanted to keep me another day but my parents were already on their way so he hooked an IV into me with hydration and hydrocortisone and within 2 hours, I started feeling a lot better.
I had to see my endocrinologist in Oakville the next day because of my situation and found out I had lost 11 pounds. I was also told that all of my hormone levels have evened out and gone back to normal. So despite what my cortisol levels said they were at the day I was discharged, the rest of my body said otherwise. Cushing’s Disease is a tricky one and every patient deals with the same issues, but heals differently. Some recover the textbook way, others have levels that go up and down for a couple of months. No one can tell what will happen until after the tumour has been removed.
I have been home for just over a week now and it’s been good. I’ve gone out a couple of times but I have a limit. Thirty minuets is usually my max before I start to get incredibly light-headed and weak. There are some days where all I do is just lay around and only get up to get a tiny meal. The first couple of months will be my hardest in terms of fatigue and it will get better, but it will take about a year for it to truly improve.
Recovering from Cushing’s is a 1-2 year road. People talk to me as though I should be healed now and only recovering from surgery itself. That isn’t the case. I will have a lot of tired days months from now. I will have random Cushing’s symptoms pop up some days, as though I still have the tumour. The road to recovery is not linear. It is unpredictable and rough. The first year is remission, really. After that, you find out if you’ve recovered. Cushing’s can come back. Rare but it can.
I have to thank my family, Eric, friends and former boss/co-workers for all their support before the surgery. It is really hard to deal with someone who has a chronic illness. I thank my family, friends and Eric for helping me through this healing. There is a long road ahead and they’ve been so helpful already.
I really need to thank Danielle for being such a major support on my journey. If you need a refresher, Danielle is a young woman who I connected with on Instagram. She had her surgery in August of 2015. She was operated by Dr. Zadeh as well. Danielle has been there since just before I got my MRI that confirmed I had a tumour in my brain. She has let me ask her questions, rant and discuss everything. I am so thankful I had her throughout this all. I can’t imagine how much more scared I’d be if I didn’t have her support. I can’t wait to be a part of her team for the walk in the Brain Tumour walk in June, raising awareness.
Thank you to everyone for all of the support always throughout this. Everyone’s kind words and support mean so much to me. Thank you 🙂