Danielle is a brain tumour survivor who first shared her story in 2015. Six years later, she has graciously provided an update AND created an amazing #TURNMAYGREY fundraiser – all the while spreading awareness of brain tumours.
On August 6 2015, after suffering for years with unexplained symptoms, I underwent my first transsphenoidal endoscopic pituitary surgery to remove a pituitary adenoma. This adenoma was and is the cause of my Cushing’s disease.
A year after my recovery I shared my story with Brain Tumour Foundation of Canada. When asked to write an update, to tell you the truth, I didn’t know where to start.
Since then MANY things have taken place. I have had two repeat brain surgeries and still continue to fight and live with this rare disease.
After my first surgery in 2015 I often found myself saying, “I just want my life to be normal again.”
However, after five years and three brain surgeries, I have realized and accepted that my life will never be the same.
I am learning to accept what is my new norm, and I am starting to make peace with the reality of my new life.
I have watched myself change significantly into a person I can honestly say I am proud of. I have come out of this a stronger person.
I have been pushed to my absolute limits and because of this I have found my inner strength.
I would be lying if I said living with both an aggressive recurrent brain tumour and Cushing’s disease isn’t difficult. Cushing’s is an unpleasant disease. It wreaks havoc on you physically, mentally and emotionally.
Even today – nearly five years after being properly diagnosed – I still continue to face many challenges and setbacks.
I just recently had my third repeat brain surgery in December 2019. Since then I have been in and out of the hospital several times. Many people think just because you had surgery the next steps are rest, recover, and get back to your norm.
If only it were that simple.
From an outside perspective, the majority of people think I look fine. Unlike a cut where you can physically see the healing process, one cannot see our brains healing or the affects this “invisible” disease has on those suffering. All of the hormone changes and other typically unnoticeable symptoms associated with Cushing’s disease make it very hard for an observer to truly understand how complex the disease really is.
With Cushing’s disease, the adenoma causes the pituitary gland to release too much ACTH. ACTH stimulates production and release of cortisol, a stress hormone. Too much ACTH causes the adrenal glands to make too much cortisol, causing all of the terrible symptoms.
After my first surgery and my most recent one, I was put on Cortef (a synthetic hydrocortisone replacement). This is because once the tumour is removed, the pituitary gland is dormant and does not release ACTH and, therefore, the adrenal glands do not make any cortisol. The goal is for the Cortef to be a temporary means until your body regulates the release of ACTH and cortisol normally.
From here, I started my journey of self-weaning. This was a test in itself. There is no “black and white” method to properly wean off your meds, and it’s different for every patient.
If you wean too fast, you’ll put yourself into adrenal crisis (I’ve found myself in the emergency room many times because of this). If you taper too slowly, you’re artificially causing symptoms of Cushing’s disease and you are not pushing your pituitary gland to wake up on its own.
When tapering yourself off your meds, your body experiences withdrawals similar to a drug addict’s. These really have been some of the worst days of my life. I am still learning years later how to manage my medications.
Cushing’s patients live a life where we have very little control. Little control over how we look, how we think, and how we feel. It’s very hard to look in the mirror some days and see my swollen, bloated face, or to go days without sleep. However, we learn to accept that our bodies NEED these meds to function; just like a diabetic needs insulin.
The biggest piece of advice I can give people in a similar situation – living with a rare disease and brain tumour – is listen to your body.
I take advantage of the days I feel well, and I rest when I need a break.
Knowing my own personal limits has become one of the most important parts of my new life. I make realistic plans and sensible, attainable goals. Prioritizing my time and understanding my physical limits with work, meals, exercise, family, and fun is important. But, I also make sure I set aside time for me!
It’s okay to say no when you are too tired, or have had a few bad days. I have accepted this and learned I am no good to anyone else if I am not okay myself. A very special lady reminded me of the example of the oxygen masks on an airplane. You put your mask on first before you help others around you.
Even after my most recent pituitary surgery in December 2019, I knew the likelihood of further treatment due to the severity of my Cushing’s disease and remnants of tumour cells in other areas of my brain.
Unfortunately, radiation is not an option for me and neither is medical therapy. I am currently in the midst of meeting with an endocrine specialist and surgeon to discuss having a bilateral adrenalectomy, where both of my adrenal glands will be removed.
No one wishes for surgery and after three major brian surgeries, I have accepted “it is what it is.”
I do see a light at the end of this VERY long tunnel. Adrenal removal is necessary to control the excessive cortisol levels in people with Cushing’s disease who fail to improve after pituitary surgery or through medication.
This is something I am willing to take the risk of doing in order to rid myself of this disease for good. That being said, it won’t be easy – but I know I can do it!
I try my best not to live my life in worry of what my future holds. To live for the moment by taking it day by day and hour by hour some days. My husband who is my ROCK and who’s life has been just as affected as mine throughout all my challenges reminds me all the time – we will cross these bridges when and if I get to them. They say having a good attitude is half the battle, but I believe it is much much more !
Having a brain tumour and living with Cushing’s Disease is a major, life-altering event.
Over the last eight years, I’ve experienced some of the darkest days of my life. That being said, I also have experienced some of the best days of my life.
I don’t feel sorry for myself and I don’t want anyone to ever feel sorry for me either. Without my struggles I wouldn’t be where I am today.
I felt so alone throughout my original diagnosis, surgery and recovery. I had no one to talk to who could relate or validate how I was feeling. As much as my friends, my family, my doctors and my therapists tried to understand, they couldn’t. Like any experience in life, no-one can fully appreciate what someone is going through unless they’ve walked a mile in their shoes.
By sharing my first story with Brain Tumour Foundation of Canada, I allowed myself to be vulnerable. I shared my struggles and the reality of this difficult disease. But I am so happy I did. It has allowed me to connect with so many people in similar situations and has allowed me to feel like I am no longer alone.
Because of this, I will continue to spread awareness of Cushing’s Disease and other brain-related illnesses.
My neurosurgeon once told me, “If our story can help just one person, we’ve both done our jobs.”
I can proudly say to her, we’ve BOTH done our jobs and exceeded with flying colours.
I am so thankful for my support system for continuing to listen to me, motivate me and push me. I am eternally grateful for my husband, my parents, my brothers, my family members, my friends, my colleagues, my therapists and my medical team.
I am thankful for all of it. The highs. The lows. The struggles. The setbacks. The comebacks.
It does take a lot of work but I promise you, YOU’VE GOT THIS!