My brain tumor story: From caregiver to patient

As a child and adolescent psychiatrist in Puerto Rico, I always tell my patients that in any situation, no matter how hard or difficult it is, there’s always something positive that we can learn. Now, I know how true this statement really is.

I learned this first-hand when I started dealing with brain tumors in the summer of 2014 -- first as a relative, then as a friend and finally, as a patient myself. Along the way, I developed more compassion for my own patients and learned the value of a good support system.

Here’s my story.

My father-in-law’s brain tumor

On July 23, 2014, our family received the devastating news that my father-in-law had a brain tumor. It was glioblastoma, a very aggressive type of brain cancer. His neurosurgeon told us that because of the tumor’s location, it was too dangerous to perform surgery in Puerto Rico. He referred us to MD Anderson’s Sujit Prabhu, M.D., for a second opinion.

Less than 24 hours after we reached out, Dr. Prabhu responded. We made an appointment with him and arrived at MD Anderson’s Brain and Spine Center two weeks later.

My father-in-law was scheduled for surgery right away. His craniotomy took place in the BrainSuite®, a special operating room with an integrated MRI, something not all hospitals have. Dr. Prabhu and his team were able to remove most of the tumor, giving my father-in-law a chance to live longer with better quality of life. We were so happy with the surgery that I told my husband, “If I ever get something in my head, I want Dr. Prabhu to be my doctor.” Sadly, my father-in-law’s tumor grew back nine months later, and he passed away in August 2015.

My friend’s brain tumor

Fast forward a few years to September 2017. Hurricane Irma hit Puerto Rico, followed quickly by Maria, a Category 5 hurricane that left the whole island without electricity and water.

Then, another disaster struck. Just two weeks after Hurricane Maria made landfall, my best friend called to let me know her husband, Alfredo, was in the intensive care unit with a brain tumor. I could not believe that another person I knew well was going through this.

Alfredo’s neurosurgeon wanted him to be transferred to another facility. I contacted Dr. Prabhu, who helped us get Alfredo transferred to MD Anderson. Alfredo had surgery with Dr. Prabhu in October 2017 and has now fully recovered from his left frontal meningioma.

My own brain tumor diagnosis

I can’t recall when my own brain tumor symptoms really started. Who wouldn’t have headaches after enduring two hurricanes, no electricity or water for months, hours-long lines to get gas and 13 people suddenly living in my house — all while still working at the hospital and trying to help those who had lost everything? But my best friend thought my symptoms were too similar to Alfredo’s. She insisted I get a brain MRI. After several months, I finally agreed.

On Feb. 1, 2018, I learned I had a left frontal meningioma -- the same type of brain tumor that Alfredo had. I was in complete denial and shock. One of the first people I called was Dr. Prabhu. He was surprised, but his words of encouragement made me feel so much better. Still, the first few days after my diagnosis were hard. I felt completely lost and depressed. I could not believe this was really happening to me.

Help from my support system

One thing that really helped was taking a trip with my husband right after my brain tumor diagnosis. We went to a beach resort in the Dominican Republic, where I had time to think, cry, calm down and finally get some sleep.

I also reached out to another girlfriend who’d been diagnosed with a meningioma. She spent hours talking with me, and her advice and support really made a difference. As a psychiatrist, referring patients to support groups is something I do frequently, but now I truly realize how important these support systems are.

My brain tumor surgery and recovery

My brain surgery took place on March 20. It was very difficult for my husband to sit in the same waiting room for a third time. But prayers from my family and friends helped us both stay focused, calm and optimistic. 

Dr. Prabhu completely removed the tumor during a seven-hour craniotomy. And, because it was a grade I tumor, I didn’t need any additional treatment.

Coping with the side effects of surgery was harder than I thought it would be. I had frequent headaches and felt dizziness and nausea. I also felt like there was a heavy weight on my head. Although I felt depressed, it helped me appreciate the burden that many of my own patients feel.

It took two months for me to start feeling like myself again and return to work. Now, more than six months after my surgery, I feel great, even though I know my recovery continues.

Gratitude for MD Anderson and perspective

Being able to go to MD Anderson was a blessing. I strongly believe that everything happens for a reason. And my experience at MD Anderson has not only given me a second chance at life, but also a better understanding of my own patients. By sharing my story, I hope others realize that no one is alone in this journey.

Request an appointment at MD Anderson online or by calling 1-877-632-6789.