Catarina's Story: Crush Cushing’s

Catarina's Story: Crush Cushing’s
I was always healthy growing up. Between the ages of 14-21 I lost a lot of weight, although my medical tests always came back as normal. In grades 10 and 12, I missed a lot of school because I was always feeling ill; panic attacks, my digestive system would stop functioning correctly, I was stressed, and I always had headaches. I missed a lot of the second semester in both those years. I chalked it up to dealing with stressful situations with peers. Anxiety and depression also runs in my family, so I thought it was just that – genetic. 
 
Although my tests always came back normal, I had ovarian cysts and my period was always irregular. None of my doctors batted an eyelash to that. I was put on birth control but no matter what type of birth control I tried, I always got sick and discontinued using it. In June 2016 I had my period for the last time. 
 
When I was nearing my 22nd birthday in 2015, I decided to eat better and work out. I’d had enough with being so incredibly underweight. Nothing helped me gain weight before, so I was determined to begin lifting weights at the gym. I thought it was working when I finally started gaining weight and looking healthy. But the weight didn’t stop, despite working out, eating well, although not eating as much. In three months, I went from size two to size eight pants, because my gut wouldn’t stop growing. It was so embarrassing. People kept asking me why that was happening despite me going to the gym. I had red/purple stretch marks from having gained weight so fast. 
 
By July 2015, I was on my third straight full-time semester for a marketing diploma, plus working, making time for my boyfriend, and studying. I now worked about 35 minutes from home and school was 25 minutes from home, so I thought my exhaustion was from never being home and constantly travelling. It became more difficult to go to the gym, and going to the gym made me incredibly irritated. I was getting mad while working out. It was a sensation I had never experienced before.
 
I was losing sleep, I was irritable, anxious and stressed. I was finding it difficult to prioritize my time and felt like I never had time for myself. I felt as though I was being pulled in so many different directions. My stomach kept growing, my patience lessened and my memory worsened. February 2016 I had started a food sensitivity diet to see if my inflammation would go down, but I only ended up gaining 30lbs in three months. I was only eating whole foods, so I was frustrated. 
 
Since I was in a marketing program, I had to do quite a few presentations. Every time I went to do one, I noticed my blazer was getting smaller and smaller on me. I ended up having to buy three different blazers and returning them immediately because they wouldn’t fit me a few days later! That is also when I started noticing my face getting rounder, hairier and filled with acne – I dreaded doing presentations. I didn’t know who was standing up there and I felt like a puffed up balloon standing in front of the class. My memory was also going downhill quickly, so it was incredibly difficult to remember what I was saying to the class. Since my food elimination diet wasn’t working, I was ready to demand more answers.
 
My next “diagnosis” was PCOS (Polycystic Ovary Syndrome). When I met with my family doctor, he told me to eat three balanced meals a day, with light snacks in-between and do exercise. I was already doing this. Thank God my mom was there. She demanded I be sent to see an endocrinologist. My mom had hormonal issues for years and ended up having thyroid cancer, so she didn’t want to see me suffering any longer in case I had the same problem. 
 
Within a couple of weeks, I went to see my endocrinologist and had all of my PCOS and hormone research completed. I was ready to quash PCOS. Within a few minutes of meeting me, he asked if I had ever considered that I may have Cushing’s Disease? I had read about it, but chose to ignore it thinking that brain tumours are “rare”. My gut was screaming at me “YOU HAVE CUSHING’S”, and my gut is never wrong. I did all the tests possible and next time I saw my endocrinologist, he told me my tests pointed to excess cortisol release coming from the pituitary gland. I was in for a rushed MRI within a couple of weeks.
 
Catarina on the day of her operationAugust 15, 2016 I got a call from my endocrinologist. I was told I had a 4mm non-malignant tumour right outside of my pituitary gland, aka pituitary microadenoma. I was beyond happy. I cried tears of joy. People kept apologizing to me when they heard the news and I kept telling them to stop being silly – it was an answer to the hell I was going through. 
 
I met the Healthcare Professional team at Toronto Western in October 2016. My journey to get surgery was a difficult one, but there was never once a moment of beating around the bush. My neurosurgeon was always upfront and I couldn’t be anymore grateful. I thought my surgery wouldn’t happen with all that went down, but mid-January, I got a phone call. I had just over 2 weeks to prepare for surgery. January 27th, 2017, I had transsphenoidal endoscopic surgery to remove my tumour. 
 
I was in the hospital for 5 days and on the fifth day, my cortisol was incredibly high and I thought I would never get better or leave the hospital. Although my cortisol was high, I was showing symptoms of withdrawal and was put on a hydrocortisone IV before being discharged. My surgeon had come to see me the day of my surgery and the day after to let me know it was a successful surgery, but the day I was discharged was the worst. 
 
Catarina 6 months from her operationI am now almost 6 months post-operation. It’s been an absolute rollercoaster. I immediately felt better the day of the surgery and onward, but there are days where symptoms still present themselves and I don’t feel like I am getting better. The weight still bothers me, but I need to be patient. I know it is decreasing, and people are noticing my physical changes. On the morning of the surgery, I weighed 188lbs and I am currently 161lbs. Although I suffered from anxiety and depression before, those symptoms have gotten worse. I worry a lot and I feel incredibly empty. My memory is still bad and I’m still foggy. Days where these symptoms are the worst, I don’t think I’ll ever get better. I still get tired and don’t want to move, but once I’m up and doing things, I do them until I get tired. 
 
I was able to get off Cortef within 2 months of surgery, but take it on the rare days where I don’t feel “right”. I still carry the medication wherever I go, as well as my medic alert information (papers and bracelet). I need to constantly remind myself that I’m only 6 months post-operation and my changes are already amazing. I need to continue being patient with myself, but it’s terrifying whenever it seems as if Cushing’s is coming back. 
 
Cushing’s is a very scary disease. At the same time, it taught me to be more empathetic towards others, appreciate the beauty in my day-to-day life, and love harder. Because of this disease, I met Danielle, another brain tumour/Cushing’s Disease survivor. I owe so much of my positive mental success to her. We spoke for just under a year before finally meeting at the Toronto Brain Tumour Walk this past June 2017. What an experience – I can’t wait to do it again next year.
 
I also created an awareness page on Facebook and Instagram called “Crush Cushing’s”, where I’ve interacted with numerous people who have been diagnosed, have been in recovery for a while, or are awaiting a diagnosis. Cushing’s is a person’s living hell, but it is such a blessing in disguise, when you take the time to allow yourself to be strong and focus on the things in life that matter. Despite my brain tumour changing my health and physical features for the worse, it molded me into a better, loving and giving person. I can’t wait to continue creating awareness around brain tumours so that we can find cures and end them!
 Thank you Catarina for sharing your story and raising awareness of brain tumours!

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