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Rediscovering myself

Published on March 12, 2015 in Share Your Story


Rediscovering myself


I was 20 years old. In my third year of college. I did not think that I had something bad in my head. I knew I was having headaches without any reason, but I thought it was normal. I knew my vision was changed, but I just thought: “I just have to adjust the prescription of my contact lenses”. The truth is that I literally didn’t have peripheral vision.

Then, in a blood test of routine, my gynecologist saw that the prolactin was super high. Then in an MRI I saw I had a more than two centimeters of a brain tumor. I didn’t know what to think. I didn’t feel something rare was in my head. It can have any obvious symptoms.

The neurosurgeon called my parents. In that reunion, he said I needed an operation. I began to tremble. I have a benign pituitary macroadenoma. He operated me three days after seeing the MRI. Ok, this was a very painful time. I awake with two big tubes in my nose. And had multiple complications. I was a whole month in the hospital. After a month, he operated me again. I was less afraid. After two months, he operated me again, but differently, in a way that will change my life forever. This third operation was opening my head. I was afraid of the hair loss, fortunately the doctors decided to not remove too much hair. And I just had four days in the hospital. My family was with me all time, though they lived three hour away from me. They stayed near me.

I was back to my college very soon, without any sign of a brain surgery. But it was time for me to go to the endocrinologist. She said I had my pituitary gland affected and I have to take 5mg 3X Hydrocortisone (cortisol) every day for the rest of my life.

Cortisol is vital for life. And I just discovered my body doesn’t produce enough cortisol. That is, I don’t have much energy nor vitality. After several months of hydrocortisone, I have a different life. I’m beginning to understand my new me every day. I gain 25 lbs of weight. My face is bigger because I suffered of many inflammations after every surgery, and because the moonface is a side effect of the hormones I’m taking. Right now I’m on a process of contacting the right specialists to renew my lifestyle. I can’t do it by myself, alone. Because I don’t have enough will and because I need to be very careful. I was trying to do some exercise by running. After that day, I couldn’t be up off bed in the morning. Also I don’t know what diet is good to me. So I go to all these specialist: nutritionist, ophthalmology, neurosurgeon, neuropsychologist, psychologist, endocrinologist, hematology, gynecologist, physician and psychiatrist.

The hardest part for me, is that I’m studying theatre (acting). I need a lot of energy and to be alert all time. Classes are not easy for me. I don’t have the same energy. It breaks my heart daily. I will pass some time until I can have a similar energy.

Also I have to interrupt classes or can’t going to my work-study program because of my medical appointments.

In this moment of my life, I’m 21, and the most important specialist are the endo and the neuropsychologist. Because I’m passing through a state of depression because I can’t do and feel like I was before surgery. I feel completely different. I feel I can’t focus, I can’t speech deep, and also feel isolated and with no friends. I also have an impulse to always be talking about what happened to me, to every person I know. I also feel I’m weak and that I was stronger before. Sometimes I feel uncomfortable with my new body. And it is not easy to lose weight when you take hormones.

I want people to know that having a brain tumor is like an invisible illness. That maybe you look fine but you are passing through a very difficult time of stress, medic visits, fear of not be able to be alive after a surgery.

After surgery, it can be worst. Your face and body is not the same. If you’re on a treatment, it can change your personality, moods, and everything you were before. And that this person have endless visits to specialists, and a very large amount of money and time is in there. That maybe it will be harder to focus, to study, to work. It is not easy. It is needed the help of someone. But not every person have someone. Maybe they have lack of motivation in thing they loved before. Please, be nice and understand this.

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