Sharing the Load: How a Strong Support System Aids Recovery from Brain Surgery

July 23, 2024, by Donita, Pilocytic Astrocytoma Survivor

In January of 2023, I was teaching my second grade class when I felt like I was going to black out. I remember I had an intense headache. Prior to this, I had a spell of dizziness and other less frequent, less intense headaches—but I thought it was just stress. My worried colleague rode with me to urgent care. The doctor did not see anything out of the ordinary, as all the tests came back fine. She scheduled a magnetic resonance imaging (MRI) scan for me in February “out of an abundance of caution.” I was shocked when the results of the MRI determined that there was a tumor in my brain. 

At the time of the diagnosis, I was confused, scared, and wasn’t sure what to do. As a woman of Christian faith, I immediately started praying. I asked my closest friends and family to pray with me as well. 

I had to choose whether to have a biopsy (a procedure to remove a piece of tumor tissue for testing) or have the surgery to remove the tumor. I was almost 37 years old and had never been admitted to the hospital, so the thought of having brain surgery was almost as nerve-wracking as knowing about the tumor. With guidance from Desmond Brown, M.D., Ph.D., and the neurosurgery team at NIH, I decided to have the surgery in May of 2023.  

Before my surgery, one of my friends suggested creating a plan for my recovery so we would be prepared. My loved ones came up with the days and times that they would care for me in shifts (with my mom as my primary caretaker). They also divvied up who would cook and help with my financial obligations.

My friends advised me not to search the internet for “what if” scenarios. Any questions that I had, I took to the doctor and his team. When I just couldn’t wait for a reply and wanted to look for myself, my friends would search for me and filter the information. What can I say? I have some of the best support any one can ask for. 

Ultimately, the surgeon was able to remove the entire tumor. When the pathology results came back, I learned I had a pilocytic astrocytoma. Because of the successful surgery and my tumor type, which usually does not spread, I did not need chemotherapy or radiation. 

Following the surgery, I was partnered with Marta Penas-Prado, M.D., and the neuro-oncology team at NIH. It has been so helpful to have regular follow-up appointments and support during recovery. If there is a problem, I know I have a knowledgeable team ready to jump in. 

During my recovery, having friends and family to help was the greatest blessing. They helped me go to the bathroom, shower, and use the stairs. My mom accompanied me to occupational therapy and physical therapy, because my left side was a bit weaker and numb. I used a walker for a short time and then transitioned to a cane that I no longer need. 

I also needed help caring for my curly hair. I thought they'd need to shave my entire head, but they only ended up shaving the incision area and the place where there was a drainage tube to prevent brain swelling. Now that my hair has grown back, you can't even see it. But for a while I could only use Johnson & Johnson baby products to make sure the incision stayed clean. That was a challenge, but I am glad that I didn’t have to do it alone.

My biggest piece of advice for caretakers is to find other willing people to share the load. Having my family and friends around didn’t only help me—it also helped my mom tremendously. My mom doesn’t stay up late and still had to work, so two friends came over to help me at night so she could rest.  

Another piece of advice is to try to get in some physical activity regularly. At the beginning of my recovery, walking around and window shopping was one of my favorite ways to get exercise. 

There’s something Dr. Penas-Prado said that has stuck with me and I pray it will encourage others: “It is OK to be hopeful.” I am grateful for that message because holding onto hope brings joy that can weather any storm.