The Good Days & The Bad Days: Navigating Brain Tumor Treatment

Life with a brain tumor has been a whirlwind of good and bad days over the past month. From experimenting with how much work I can handle to making difficult medical decisions, my health journey has had its fair share of ups and downs. Here’s a look at my latest experiences as I continue navigating treatment, symptoms, and everything in between.

Balancing Work and Health

Experimenting with Work:
Recently, I decided to test my limits by trying to work a full day on some websites. After about six hours, the familiar, excruciating headaches kicked in, and I had to call it quits. I’ve noticed that my cognitive processing is slower, and I forget things easily. It’s frustrating, but these challenges are a constant reminder of how my condition impacts even the simplest daily tasks.

Medical Consultation and Decisions

University of Virginia Recommendation:
About two weeks ago, my endocrinologist, Dr. Patel, returned from a conference where my case had been discussed. The doctors at the University of Virginia suggested a complete removal of the tumor. This recommendation frustrated me because my neurosurgeon, Dr. Ware, had previously advised against this, given the tumor’s proximity to my hypothalamus—an area critical for regulating body temperature, hunger, emotions, and more. Despite this, Dr. Patel scheduled an MRI for June 21st to reassess my situation.

MRI Results and Options:
On June 21st, I went in for the MRI, and there was a bit of good news: the tumor had shrunk since my biopsy! Now, only a small part remains near my hypothalamus. The doctors presented two options: continue with medication or undergo another surgery to try and remove more of the tumor. Even with the tumor shrinking, no one seemed concerned about the other issues I was dealing with—like migraines, dizzy spells, and mood swings.

Managing Symptoms with Medication

Gabapentin Prescription:
One of the medications I’ve been prescribed is Gabapentin (300 mg three times a day), which helps with the nerve pain I experience between my knee and ankle. While it does reduce some of the pain, it’s far from a cure. The numbness persists, and the medication leaves me staggering with hand tremors. It also somewhat reduces my migraines, but my other symptoms have worsened over time.

July 17, 2016 Update:
Over the past few weeks, the numbness and pain have spread to my left leg and arms. Simple tasks like stepping up a step make my head spin, and I find myself sleeping most of the day, plagued by persistent headaches.

Setbacks and Surgical Decisions

August 24, 2016: A Turn for the Worse
Just when I thought things might stabilize, the migraines came back with a vengeance. My vision started to blur again, setting off alarm bells. My Grandma and Mom quickly reached out to the hospital, and soon after, I was back in for an emergency MRI.

Pre-Op Challenges:
The results were troubling, and Dr. Ware and Dr. Patel decided that surgery was necessary to remove the pituitary gland and remaining tumor. However, even the pre-op process was difficult—multiple failed attempts to find a vein for the MRI made the experience even more exhausting. Dr. Ware walked me through the procedure, promising to avoid damaging the hypothalamus. There were still risks—potential optic nerve damage among them—but surgery was the only option.

Surgery Outcome:
The day of surgery came and went, and thankfully, it was successful. The doctors removed as much of the tumor as they could, and my vision remained intact. However, this journey is far from over. While the surgery was a win, new challenges always seem to be waiting just around the corner.

Conclusion

Living with a brain tumor means constantly adjusting to new medical realities, treatment plans, and symptoms. Every good day is a blessing, and every bad day is a reminder of how much strength it takes to keep moving forward. Sharing my story helps me process it all and connect with others facing similar struggles. I hope this update has been insightful. If you have any comments, questions, or suggestions, I’d love to hear from you below.