I have a brain tumor; what now?

Over the past three years, I’ve been dealing with a situation that has changed my life in more ways than I’m willing to accept. I’ve come to understand the power of empathy and compassion in ways I never expected. I’m not sharing this story to seek sympathy, but rather to offer a glimpse into the challenges of coping with a condition and navigating life. I feel like it’s not a subject that is often talked about and writing about it has been therapeutic for me. Brace for impact, it's a long read and I may be too honest. I invite you to delve into my experiences and thoughts from the past three years.

Diagnosis and initial challenges

I’ve written about my condition before, back when everything was still new for me. But as time passed, my perspective on the situation changed, leading me to a better understanding. The date that stands out for me is October 19th, 2021; the day I received the results of my initial MRI scan. This day is memorable not only for the outcome of my scan but also because it’s my best friend’s birthday. On that date, the Endocrinologist informed me of a benign tumor in my pituitary gland, the part of the brain responsible for hormone regulation. He recommended medication as surgery could be too risky. I was 28 and did not know what this would mean for my life or the ones around me. 

Upon receiving the results, I chose to go celebrate my friend’s birthday instead of going home and process the outcome. I wanted to be there for him as he has always been there for me. Me, being me — putting everything and everyone else before myself — put on a smile, shared the situation with my friend, and continued to celebrate his special day. Looking back, I realize that I should have gone home. Today I know that choosing myself doesn’t diminish my love and appreciation for him.

During the same week, I told my close ones about my situation. One valuable lesson I’ve gained is that when you disclose new information, people may have questions —or none at all— some of which you may not have considered and therefore don’t have the answers to. This can feel overwhelming. It’s like announcing “My ship is sinking,” and receiving responses like “Why is it sinking? “What color is the ship” or "Why is the ship even in the water?”. Do you see what I mean? I’ve come to realize that this is a natural response, as people ask questions out of love and a desire to understand. I wanted to understand too, so I educated myself on the subject to answer the questions. Three years have passed, and I’m still educating myself and others.

Treatment and side effects

The next week, I began taking medication. Within 5 minutes of swallowing the pill, I experienced dizziness, goosebumps, and a need to lie down. The tiny pill I took was powerful. The medication is primarily prescribed for individuals with pituitary gland tumors or Parkinson’s disease. It comes with a range of side effects. I experienced: severe thunder headaches, migraines, depression, mental fog, forgetfulness, bloating, fatigue, panic attacks, negative thoughts, and various other symptoms. The symptoms would fluctuate, coming and going like the ebb and flow.

While taking the medication and experiencing the side effects, I became highly self-conscious. I didn’t want this “condition” to define me. I tried to remain the determined, studious, joyful person I have always been. I also consider myself a very present friend/sister/daughter. So I made a conscious effort to keep up - checking in on loved ones, showing up at gatherings - until I reached a point where I couldn’t fully participate. This required significant effort. I was feeling tired, disconnected, and concerned about myself.

There were times when I was less lively than usual, and this raised many questions like: why aren’t you dancing? Why are you so quiet? Why are you tired? I knew my deminure was somewhat normal, but internally I was far from normal. I understood that my “condition” was mainly psychological rather than physical; it wasn’t a visible injury that could be treated. This was as new to me as it was to those around me. I then discovered that when something isn’t visible or directly felt, it’s easy for people to overlook its existence. I hardly linked my actions to my condition, as I didn’t want to be the “sick” one. My responses often included phrases like, “I don’t know, I’m just tired,” or “It’s just the meds.”

Coping through setbacks

At some point, the side effects became too much for me to handle, leading me to cry and feel extremely sad over small things or nothing at all. I knew I needed to take a step back. So I withdrew from socializing and sought therapy. Engaging in grief recovery allowed me to create space to confront my emotions. During my time off  —about a week and a half, which wasn’t nearly enough—  I came up with the idea of organizing a trip to Puerto Rico with my girlfriends to attend Daddy Yankee’s “final concert” in January 2023. Despite battling depression and keeping most emotions to myself, the idea of the trip gave me something positive to look forward to. I shared the idea with my friends who were also excited about it, and I delved into planning the getaway. Meanwhile, I continued to suffer from headaches, and feelings of detachment while I was also working, as the bills still needed to be paid. Moreover, the dosage of my medication was reduced due to its depressive side effects.

During the summer of 2022, I was excited to attend festivals and watch performances of my favorite artists. I was happy to have something to look forward to. Regrettably, just a day before the festival, I had to undergo emergency surgery due to an infection on my back. The girl couldn’t catch a break, but I managed to cope with the situation. Thankfully, my wonderful friends video-called me while the artists were performing, so I was present in spirit. The following week, I decided to bring my recovering back to the next festival and decided to have fun with my friends. It felt like I was racing against time, trying to live fully before my circumstances worsened.

Navigating Disappointment and Seeking Resilience

Several months later, the doctor informed me that my hormone levels were unstable and that we needed to increase medication dosage. Side note, I had to take blood tests every three months to monitor the medication's effectiveness on my hormone levels. We adjusted the timing and dosage to help my body tolerate and reduce the side effects. This meant adhering to a strict medication schedule and abstaining from alcohol on certain days. It’s important to note that the medication could cause fatigue and should not be combined with alcohol at the moment of intake. This led me to turn down alcoholic drinks which made me feel excluded, and self-conscious. There were times when I chose to skip the medication just to fit in and enjoy socializing without restrictions. I didn’t want to draw attention or be treated differently. I went to great lengths to maintain a sense of normalcy and preserve my identity. 

Furthermore, In October 2022, a year after receiving the diagnosis, I had the opportunity to travel to Tenerife to celebrate my dear friend. Despite being a brief trip, it was a memorable experience that allowed me to break free from my worries and find peace of mind.

Moreover, I was dedicated to the upcoming girls’ trip. Being a typical Virgo, I was fully committed to planning and ensuring everything was perfect for our enjoyment. I was eagerly anticipating exploring the island with my friends. I was also craving a much-needed breach and change of scenery. Unfortunately, fate had different plans.

Due to some strictly required documentation demanded by the U.S. and Puerto Rico, not everyone in the group was able to enter the country. This situation was disappointing and hurtful for all parties involved. The remaining group members stayed in The Dominican Republic, while I and another friend were in Puerto Rico. On top of that, my luggage went missing, leaving me with just my handbag on the island. The entire situation was devastating to me. Everything seemed surreal, almost like a nightmare. It’s worth mentioning that I usually travel solo, and this was my first time organizing a trip for a group of 7, which didn’t go as planned. The experience felt like a personal failure and was intensified by my natural tendency of self-criticism and the effects of my medication.  I felt like life was punishing me, and I questioned everything.

Despite my efforts to remain who I was before my diagnosis, I found that person slipping away from me like sand through my fingers.

Struggling with identity and Searching for connection

Upon my return home, I felt broken-hearted, carrying only a bag and a shattered mind. Despite my efforts to remain who I was before my diagnosis, I found that person slipping away from me like sand through my fingers. I was disappointed in life and uncertain about my identity. I felt disconnected from the ones around me, feeling a growing sense of loss of control. Yet, I persisted in wearing a smile and soldiering on, as perseverance was in my nature. Internally, I became indifferent, and cynical, losing faith in myself, embracing procrastination, and giving up hope for a better future. I strongly believed that I didn’t deserve all that was happening to me. Why was it even happening? Don’t get me wrong, good things were still happening to me, but, in my mind, they didn’t have the same impact as the “less-good” ones. What sustained me were uplifting conversations with friends and the encouraging messages and songs they shared with me. Additionally, my surprise 30th birthday celebration, organized by my loved ones, brought me a lot of joy and is marked as one of the happiest days I have experienced in the past three years. I felt alive, loved, and happy!

Unfortunately, since I began taking medication, I have mostly been feeling numb or sad. Occasionally, I experience a brief moment of clarity where I feel positive and energized. It’s challenging to wake up each day with fluctuating moods and have to navigate through them. During those rare good days, I dedicate my time to personal creative projects that uplift me for a short while. However, it requires a significant amount of energy and effort from me to bring them to fruition. As a result, I often initiate them but struggle to complete them.

Months later, my medication was increased once again due to unstable hormone levels. I mean, can you blame them? Life was very much “lifing”. It felt like a change and negativity was the prevailing theme of my life. Yet, I pushed through. I made a conscious effort to travel and seek moments of joy to create my own version of “happy”.

I rarely talked about my emotions as when I did, some would deflect the conversation or simply nod without knowing what to say. At times I felt misunderstood and was lacking the support I needed. Trust me, I don’t blame, accuse, or have resentment towards anyone; society failed to equip us to address and console feelings of sadness, grief, depression, or illness. Life itself is challenging, let alone when dealing with someone facing health issues and societal expectations. I recognize the complexities this brings for bystanders, especially when they are fighting their own battles. However, as a human, I needed to be acknowledged and empathized with. Therefore, I thank God for therapy and those who provide me with encouragement and understanding. Yet, I couldn't see how my life would transform and get better.

Before we continue I want to thank you for taking the time to read all of this. I appreciate your attention and courage :) I promise I’m almost finished.

Back in the summer of 2023, I began listening to the sermons of Pastor Sara Jakes Roberts. I was inspired by her faith and unwavering commitment to walk in her purpose. I aspired to have that same confidence and purpose in my own life. Her journey inspired me to believe that God could transform my life.

Embracing Faith, Healing, and Personal Growth

Fast forward to October of 2023, my hormones were still unstable which led the doctor to suspect a potential growth of the tumor. I was in disbelief. But then I consciously decided to have faith in God instead of questioning him. I realized that having a victim mindset, even if subconscious, was not helping me. So I chose to face the music and focus on healing and being honest with myself.

This journey has taught me that what you resist, really persists.

For 2024, I prioritize my medication intake, viewing it as a form of self-respect and self-care. I restrained myself from alcohol on specific days and avoided overwhelming environments. I also accepted that I was the only one responsible for my well-being. At the beginning of 2024, I finally received positive news from the doctor - the medication was effective, and the tumor was shrinking — Glory to God! This news was surreal, similar to when I first received my diagnosis. This also reinforced my faith.

Moreover, increasing the shrinkage meant an increase in my medication which I accepted. In the meantime, I focused on strengthening my relationship with God and myself. I started to set boundaries and my emotions and needs became my priority. Accepting this new version of myself and embracing my “condition” — as the sick one— has not been easy. But this journey has taught me that what you resist, really persists. Therefore, I had to surrender.

 

The side effects I experienced this year, include isolation, a lack of interest in my usual activities, severe brain fog, forgetfulness, difficulty understanding simple things, and a tendency to overanalyze the most basic things. This can be quite frustrating. Furthermore, I have been experiencing pressure in my head, along with persistent headaches and fatigue. On a more positive note, I started to believe in a life of possibilities, became more intentional in my prayers, explored natural healing remedies, and pushed myself harder to complete projects - such as this website and my natural hairstyle. I take great pride in these achievements! Bear with me as I strive for consistency with content.

I’m also proud of maintaining my job and excelling in it. I am grateful for those who gave me space, provided uplifting songs and words, and checked in on me.

Making peace with the transformation

These past three years have been very challenging for me mentally, but I’m glad to see gradual improvement. I never would’ve thought that my circumstances would impact my personality and force me to look within and take better care of myself. While I knew I was resilient, these struggles have unlocked a newfound strength that I never imagined I had. I thank God for that. It may sound crazy, but in a way, I am grateful for this experience as it obliged me to pause and reevaluate my life, choices, values, and self from a more meaningful perspective. I now have a more genuine love and respect for myself. The journey continues, but I certainly made significant progress. I’m certain that this transformation would not have been possible without this experience.

I remain hopeful and am praying for a miracle.

As I look back on these transformative years, I am grateful for the lessons and the strength and resilience discovered within me. While the journey continues, I embrace the newfound self-love, self-compassion, and understanding I have developed through the experience. In a few weeks, I am scheduled for my final MRI for this year. I remain hopeful and am praying for a miracle. Your prayers for my health would be greatly appreciated. I hope to recover fully, and I have faith that it will happen. I would like to start 2025 with a new storyline.

To those who are dealing with similar mental health challenges or health struggles: know that you are loved and that your existence on this earth matters. Despite moments of doubt, have faith in your ability to deal with any obstacles. Take rest when needed, but don’t you dare give up! Have confidence in your resilience!

p.s. Everyone you meet is fighting a battle you know nothing about. Be kind, always.