This website uses cookies that help the website function and that help us understand how you interact with it. Please read our privacy policy for more information.
On February 19th, 2018, I became one of many that are affected by brain tumors. After experiencing headaches and dizziness for about a month, I went to the Emergency Room where it was discovered that I had a tumor (later determined type: hemangioblastoma) and cyst in my brain.
Within hours I was rushed into an 11 hour life saving surgery. I spent the following month in acute rehab relearning how to sit up on my own and how to walk. After being in the hospital for 23 days I was finally able to return home to my husband and 2 year old daughter! The journey was far from over, but I was so happy to be home with my family. It has now been 7 years from that life changing day. I’ve spent those years gaining strength, learning to give myself grace, patience, countless hours napping (haha) and adjusting to the new me, to my new normal. I am forever changed, but in a positive way. I’ve been given the chance at a “bonus life” and I’m not wasting it! My journey continues, and I’m excited for the future.
My life changed in many ways after my brain tumor surgery. I think something that is very common with most brain tumor survivors is the level of exhaustion that simple tasks can bring. Even 7 years later a grocery store trip can take out all my energy (hello disco club music in aisle 4). It took some time to figure out my new normal and for my family to figure out my new normal. I’ve learned to really speak up for myself and what I need. I think the hardest part in which life changed post surgery was how to navigate being an active and present mom to a young child while going through such a hard recovery with physical, occupational and cognitive rehabilitation. It was very difficult, and still is. The fatigue can impact some aspects of that dynamic but in other ways it can strengthen it. Our bond is unbreakable and I’m blessed to continue to be here to watch her grow.
Brain tumors and brain injury are often invisible. It’s difficult to find someone who really understands what you are going through. Through community’s like National Brain Tumor Society and others, you get a chance to connect with people who are going through similar things and can really relate. Sometimes, especially early on in recovery, feeling seen is what you need most to help your “new normal” feel more normal.
This month is very important to me. It’s a time of reflection and a time of appreciation. It’s a time to thank my amazing husband, daughter, parents and family for helping me become stronger, mentally and physically.
It’s a time to bring awareness to the brain tumor community and to highlight the importance of aftercare and rehabilitation. Early Acute rehab and proper aftercare when leaving the hospital allowed me to progress further in recovery. This physical therapy helped me achieve goals that I know wouldn’t have been possible if I was left without resources and access to care.
Sadly, many are not as lucky as me, many do go home far too early and are thrown in an environment that their brain and body are not ready for, severely reducing quality of life. We need to change the standard of aftercare and make sure no one is “hoping” for proper care and instead everyone is guaranteed the same chance I was given.
Going through a brain tumor diagnosis and surgery is unique to everyone. No one brain tumor is the same, no one recovery is the same. It is important to listen to the patient and their individual needs.
Just a love note to my number one caregiver, my partner in life, my husband. I spent 23 days in the hospital and rehabilitation program and my sweet husband was by my side the entire time (and continues to be). He slept on uncomfortable ICU chairs, fed me breakfast every morning when I could not do it myself, made sure to give our beautiful daughter extra love and attention, and was the strength for our family in a time I know was hard to be strong. Seven years after my surgery and he continues to show the same love and care. This selfless man is my lifeline and puts his whole heart into loving myself and our daughter. He is a large part of the reason why I continue to fight to get stronger every day.
