I haven’t added anything to my blog in a very long time. I began drowning in my dark places. They would come and go, and there seemed to be no real reason, or help for me. I spent many days wishing my existence away. I often had moments where I wished that there was something physically wrong with me so that I could understand and the people around me could understand how I was feeling. There were so many dark feelings that I just didn’t know how to deal with. I found myself so deep in the darkness that I did not even want to teach my dance classes. My dance classes have always made me feel better, whether I was ill or just in a bad mood, dance fixed it all. But, in my darkest hours dance couldn’t even save me. It was frustrating when I looked in the mirror and had no idea who it was looking back at me; when I would yell at my children over nothing; when I was sad for no reason and all I could think about was how happy I used to be and how I had no reason to not be happy now.
Well, August 2017, I go to see my doctor. I am concerned because my cycle has become irregular. At a closer look she tells me that it is not really irregular but instead that I have simply stopped ovulating. She tells me I should try to lose weight and it will probably come back. I really don’t appreciate this comment. I knew that I was overweight, but I was not at a weight I had never been at before and my cycle had always been regular. On top of that, I knew that my mental state was more likely the culprit for both, the weight and the irregular cycles. Well, that was the last cycle I had.
Fast forward to March 2018. I return to the doctor, concerned that my cycle had stopped, but a little worried that the answer will still be ‘it’s probably weight related.’ Instead, the doctor sends me for blood work. She also sends me home with a prescription that will kick start my cycle if my blood work comes back normal. My blood work does not come back normal. I get a call from my doctor just a few days before I am leaving for a family vacation. She tells me that the prescription will not work. She starts telling me about my pituitary gland, which is the master hormone gland, in the brain. She tells me that the elevated prolactin in my blood work is likely caused by a small lump on my pituitary gland. She tells me this lump will likely have to be removed. She tells me this is very common, and not to worry about it as it is not a big deal. Panic sets in. What I heard was, ‘lump, brain, needs to be removed,’ which translates to “BRAIN CANCER!” I have no reason to believe that it is brain cancer, just those three notes, the important things she told me, all I can think is I must have cancer. I am terrified.
My wonderful husband does a quick google of what she said, pituitary gland lump, her actual words. He finds just what she said, it’s pretty common, not a huge deal. A bit of relief. I start doing my own research on pituitary tumours. Now that word, tumour, spreads a lot of fear all on it’s own, so I will say right now that they are very rarely cancerous. I started looking up symptoms of pituitary tumours. There are so many symptoms, it can mess with your entire body because the pituitary gland controls all your hormones. So, weight gain, anxiety, depression, irregular cycles or no cycles at all, pregnancy symptoms, headaches, these were all explained by this thing in my head. This news brought me some relief because now there was this physical problem that explained so much that was going on with me. There was now some hope that I might feel like myself again.
May 2018, I get an appointment for an MRI. The pituitary tumour is confirmed. It measures more than 2cm, which classifies it as a macroadenoma, aka a big tumour. I am lucky as it is not interfering with anything else; it is close to but not touching my optic nerves and touching the carotid artery but not blocking the flow. This is mostly good news. However, now surgery is a real thing. While I know it’s the best option, it is extremely terrifying. Especially know HOW they do this surgery. I won’t get into it, but if you want to know, google endoscopic transphenoidal surgery. Good news, no visible scars, bad news, it’s disgusting and still NEUROsurgery.
The rest is all pretty quick. There are more blood tests, a field vision test, and a meeting with a five person team. This meeting is where I find out that my surgery will be July 13, only three weeks later. Then there are more tests, 3 hours worth of blood tests, another MRI, an echocardiogram, a pre-op appointment. I end up at the hospital almost every second day between the meeting and my surgery date. All the while trying not to panic and trying to keep up with my children and my life. June and July are just chaos. In all honesty, I was still just coming to terms with the idea that I had this thing in my head and now I was trying to cope with the fact that it was about to be removed.
Going in for surgery was extremely difficult. Another MRI early in the morning before my 7:30am surgery. Then, wait. Then, sit outside the operating room on a stretcher, freezing and talk to an anaesthetist about how I am going to be sick after the surgery. Go into the ER, lay down on a cold “bed” and stare up into crazy medical stuff, I can’t even describe. Then, lay there while the surgeon’s stand above you and talk about me, what’s wrong with me and what they are there to do to me. Then, wake up to chaos, can’t focus, can’t stay awake, sick. Get moved to an elevator and into a room, still can’t stay awake, getting motion sick because I can’t focus on where I am, or who I am, or what is going on.
On to recovery, which is where I am now. The first two and a half days I’m in the hospital. IMCU, it’s kind of like ICU but not quite. I get to be in my own room, which is nice. On the second day I know I am supposed to be getting up and moving around, but feeling stuck in my room, not really sure how I am supposed to do anything. I could get dressed, but I can’t bend down, I am not supposed to for 6 weeks. I also worry that pulling a shirt over my head will hurt my nose. My legs are a bit weak, too. And I am so tired. I finally go for a walk around the floor, I feel a bit more free now. My surgeon tells me I can go home. I get to go to my Nan’s, I can’t go home, I can’t play with my children, I can’t be alone. My children visit, I hang out with my Nan, I start figuring out how to do things so that it doesn’t hurt, like sleeping, showering, eating even though I can’t breathe through my nose. I am considered adrenal insufficient because of the surgery, I am on meds for this, meds that the nurse explained are extremely important and that if a dose is missed it could be very dangerous for me, like emergency room or worse. Luckily, blood tests show that I can wean myself off these meds, by three weeks post-op I am completely off the meds. Everyday gets a little better, but I am still tired. It’s hard, you can’t see that I recently had surgery, so it feels like sometimes the people around me, especially my children, forget that I still can’t quite do what I used to. I still get tired really easily. I find it hard to believe that I will be back to myself in two and a half weeks.
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