How did I discover my brain tumor you ask? Well, this is where my story begins and how a family history of three brain tumors led me to discover my own – but more importantly taught me the value of self-love and the power of positive thinking.
By sharing my experience, my hope is to help others either facing a health crisis of their own or a loved one, understand that while we may not be able to control the situation, we are able to control our thoughts and our reactions to the situation. I understand how these words are much easier said than practiced; but can transform our life when we dedicate ourselves to them. Learning to separate ourselves from what happens to us and beginning to see how we respond is the ultimate gift we can give ourselves. And with that, here is my story.
In April 1999, my family received the devastating news that my mother was diagnosed with a Grade IV – Glioblastoma (GBM) – the most common and deadliest of malignant primary brain tumors in adults and is one of a group of tumors referred to as gliomas. Classified as a Grade IV (most serious) Astrocytoma, GBMs develops from the lineage of star-shaped glial cells, called astrocytes, that support nerve cells. GBMs develops primarily in the cerebral hemispheres but can develop in other parts of the brain, brainstem, or spinal cord. At 42 years of age, my mother lost her battle in less than three months and died early August. I watched as the tumor depleted her mind and body and put an end to her short-lived life. I was 23 and lacked coping ability to help me deal with the situation which left me feeling helpless and defeated. Little did I know, this would not be my last brain tumor experience.
Fast forward to May 2004, newly engaged to my husband when a second brain tumor struck my husband’s father. Having exhibited no prior symptoms, he was also diagnosed with a Grade IV – Glioblastoma (GBM) and lost his battle in less than six months at the age of 60. While the diagnosis was a shock to my husband and his family, they chose to remain positive. Having recently lived through the similar experience with my mother, I tried to support my husband as best I could, however struggled with feelings of helplessness again, as I knew there was not anything we could do to change or fix the situation. Feeling depressed and defeated, the brain tumor ended another life.
In the Fall of 2014, my brother called to share his news. After experiencing a few random ‘phantom smells’ (also known as olfactory hallucinations “Phantosmia”), he underwent an MRI where they discovered a golf ball size Grade II Astrocytoma – which are typically slow growing brain tumors and rarely spread to other parts of the CNS. Following the diagnosis, he underwent surgery where they were able to remove half of the tumor. For me, this third brain tumor was a pivotal experience. I could not control or fix the situation and knew it was finally time for me to face the hard truth and understand this very important life-changing lesson. While I could not control what was happening, I needed to challenge myself and realize that I could control how I was responding to what was happening – and then it hit me because that’s when I realized where the power was!
I shifted all negative thoughts into positive energy and began a GoFundMe campaign where we raised just over $45K to help support my brother and his family. The outpouring of love and generosity was unbelievable. Rather than dwelling on the diagnosis or the unknowns, he is thriving as a husband, father, and paramedic and living his life with purpose. A few years later, another MRI showed that the remaining tumor had since grown, and treatment was needed. My brother completed twelve rounds of chemotherapy in 2020 – and now we wait to see whether additional treatment is necessary.
I cannot recall when my own brain tumor symptoms really started. In the Fall of 2014, after receiving the news of my brother, my primary physician agreed that based on family history, an MRI was in order as a precautionary measure and baseline. Despite the presence of scattered nonspecific white matters on my brain, no brain tumor was detected. Fast forward a few years, I began to develop severe headaches which gradually turned into ocular migraines that are characterized by vision changes such as vision loss, blind spots, zig-zag lines, flashes of light, or seeing stars. These migraines were random and initially did not impede on my daily life. Since 2014, I had a total of four MRIs, none of which identified a brain tumor. Despite the persistent migraines, I did feel like I was proactively managing my health by eating healthy and excising daily.
In December 2020, my migraines began to increase and under the guidance of my family doctor, I underwent my fifth MRI on February 24, 2021. Within a few hours of leaving the hospital, I received the news. A meningioma brain tumor located in my left frontal lobe. Filled with sadness, shock, and disbelief, I initially opted to keep the news quiet. Knowing I needed to act fast, I was met with two highly recommended neurosurgeons the following the week. Both doctors confirmed the meningioma tumor, however their course of treatment differed. The first neurosurgeon reviewed all five MRI scans and determined that the tumor existed back in 2014 and had since grown.
Since I was symptomatic, he believed the risk of waiting imposed more danger and recommended surgery. The second neurosurgeon had not thoroughly reviewed all previous MRIs and took a conservative approach and recommended that we wait another three months and observe the tumor. He believed the risks of surgery were high and outweighed the benefits. Despite two opposing treatment plans, my decision was simple and clear. The tumor had to be removed. My surgery was scheduled the following week on March 18, 2021. Following a three-hour craniotomy, my brain tumor was completely removed. Since it was a grade I tumor, I did not need any additional treatment. The first week following surgery was a challenge. Coping with the side effects of surgery was more difficult than I anticipated. I had frequent headaches, dizziness, nausea, and minor speech impediments.
Several weeks following my surgery, I decided to share my unique experience with brain tumors and lessons-learned in the hopes that it could help others who may be facing similar health situations. The following are a few of these lessons learned.
1. Stay positive in negative situation and you win
Life is full of ups and downs and if we are facing pain of dealing with a negative situation, then we might as well the opportunity to learn something from it too. Rather than dwelling on the situation or blaming yourself or others, we should rise and learn from it instead. When we react to negative situation positively, we control our emotions and state of mind leading to better and longer health.
2. Get support
My initial reaction to keep the news of my brain tumor private was an emotional reaction based on vulnerability and fear. Many including myself, believe that hiding our feelings is brave. Yet, having a shoulder to cry on, an ear to listen to, does not make us weak. The love and support I received from family, friends and co-workers motivated and encouraged me to stay positive and remain patient during recovery. The meals donated by my co-workers, the flowers, gifts, and messages were all appreciated and will forever last in my memory. For me, my support network led to a better journey and a quicker recovery. By reaching out to others and letting them into our life, even at our lowest moments is not weak; it is strong.
3. Focus on what you can control, and let go of the rest
Evidently, I learned the long and hard way that we cannot always control the situation that we find ourselves in. When faced with a negative situation, we make the decision to simply react and fall victim or we choose to be in control. Over the years, I have learned that this take practice, but being aware of our thoughts and emotions is a huge step in the right direction. We need to realize that we are in control of our thoughts and actions and have the power to choose. We can either learn from it or we can let it eat us up. The choice is ultimately ours.
4. Be your own advocate
Being your own health advocate means taking control of your medical care and being an active participant in your diagnosis and treatment plan. For me, it meant advocating for myself by researching my own health condition, finding a reputable neurosurgeon, asking the tough questions, and having the confidence to make the choices that were right for me, such as deciding to undergo brain surgery and having the tumor removed. By stepping up, it helped me feel empowered and confident as it sent a message to my healthcare team that was invested in receiving quality care and wanted to be part of the conversation when it came to making decisions about my health.
5. Give yourself some space and grace
Often, we extend grace to others but forget to save some for ourselves. As a person who is generally physically active, I knew recovery was going to be a challenge. The initial days following surgery were slow and frustrating. I beat myself up and turned a critical eye inward, at which point a close friend of mine sent me the following message: “Jen, it’s going to take time, try to give yourself grace.”
During recovery as you live each day the small steps you make become your norm and you might not see or appreciate your daily achievements. Yet, we should still focus on the small, daily habits to help keep us on track. It is important to tend to the essential during recovery, whether it be rest, exercise, meditation, and give yourself permission to let the other things go. After all, they will all be there again when life gets back to normal. Giving yourself grace is not one action, it is a mindset. Grace is celebrating what you have done today and recognizing you are doing a good job, even when you feel like you are not.
Lastly, be patient and trust the process. Life is a journey, not a destination – and if there is one thing that this brain tumor revealed more than ever, is that my life is a precious gift.