Breanne’s Story: Finding Hope in Accepting My New Normal
My life before diagnosis was pretty hectic. I was very active, volunteered at a local animal shelter, was involved in organizing an ultimate disc league, went back to school to complete my BSc degree, worked full time as a Radiation Therapist, and was a “mother” to two rescue dogs.
I began experiencing odd symptoms probably a year before diagnosis: loss of libido, irregular periods despite being on oral contraceptives and then no periods for eight months when I stopped taking them, sensitivity to bright lights, worsening headaches and migraines, hot flashes, and weight gain.
I mentioned the issues with periods to my family physician who ordered some blood work. The result: prolactin was elevated, so my physician ordered a brain MRI to see my pituitary gland.
I had my MRI on Friday November 27, 2015 at 10:00 am. 1 hour after returning to work that same day, I received a call to see my GP first thing Monday morning. And that’s where I received my diagnosis: pituitary macroadenoma
My anxiety went through the roof at this point. I never wanted to be alone. I could not concentrate. I ended up going off work for almost a month, because I could not focus enough to be at work and care for my patients. Part of the issue was receiving this diagnosis and then not getting any information on what it meant. My GP didn’t have the answers and my consults with all the other doctors (ophthalmologist/surgeon/endocrinologist) did not occur until over a month later.
I did not tell a lot of people right away. It was something I needed to deal with without constantly being asked how I was doing. After a while though, I became tired of not talking about it/feeling like I needed to hide this significant thing that had happened to me. I also wanted to be the one who shared my story.
I started writing a blog
. I used this medium to share my journey, to educate people on my type of tumour and the treatments I needed to undergo. I also used it as a form of therapy. Writing down my thoughts and experiences helped me to make sense of everything in my head.
It was believed that my tumour was not actually producing prolactin but, rather, the pressure of the tumour on the pituitary stalk was resulting in the slightly elevated prolactin levels. My tumour had also grown a significant amount in two years (I had had another brain MRI in 2013 for other issues that had come back normal). Due to this, medication was not used for my treatment and I was scheduled for surgery at the end of March, 2016.
I ended up with some side-effects following surgery, but none of the ones I had been told to expect. Other than some sinus pressure, I did not really have any pain or headaches. I was lucky to not experience a CSF leak. My side effects were more related to rebalancing hormones and medication. I had extreme mood swings, I did not sleep for more than a couple hours at a time for months (unfortunate reaction to being prescribed my steroid incorrectly and not catching this for at least two weeks post-surgery), and I had awful gastritis and esophagitis (also related to my steroid) which resulted in a weight loss of more than 20 lbs. I developed panic disorder. Every single time I had a panic attack I thought I was dying or going crazy.
But slowly, things started getting better. I regained my strength. I started being able to eat again. I learned to manage my extreme emotions. I returned to work full time after 7 weeks. I started going for counselling to help manage the panic attacks and learned they had likely been brought on by a traumatic event (brain surgery). I ended up getting my period again. I figured out how to properly take care of myself.
6 months after my surgery when I thought things were finally looking up, I received the difficult news that my prolactin was elevated again. My initial thought was that the surgery was unsuccessful and I had gone through all of that for no reason. There was momentary fear that my tumour had come back (but my follow-up MRI showed no residual tumour). This was a hard time for me, because I was questioning my “everything happens for a reason” belief.
With the help of family and friends, I was able to navigate my way through this setback. My husband has been my biggest support. He has been by my side every step of the way, never wavering. He continues to remind me to not be too hard on myself, to take things one day at a time, and to celebrate all of the small victories. I am thankful every day to have him in my life.
My advice for anyone else going through a brain tumour diagnosis is to reach out to the brain tumour supports
that are offered, even if you have a great network of friends and family. I was late in finding online support groups
(about 10 months after my surgery) and I think if I had found them sooner they would have helped with my anxiety immensely. I am now realizing that I am not alone in all of this, and what I have experienced is not abnormal. Connecting with others has given me a sense of hope.
Also, take time for YOU. I have had to slow down a lot compared to how I was before my diagnosis and surgery. I no longer volunteer for the organizations I used to. I (thankfully) finished my degree and am taking a break from education. I have to plan every day to make sure that I do not schedule more than I am able to manage and sometimes find I have to say no to invitations. I make sure I have recovery time after any big events that I take on. I try to go out and experience nature about once a week to rejuvenate my soul. Although I have grieved the person I once was, I am trying to accept and love my new normal. Being happy with my situation goes a long way in making me feel great physically and mentally.
Thank you Breanne for sharing your story and for letting others know that they are not alone on the brain tumour journey!