This Gray May, we come together to amplify the voices of the brain tumor community and highlight the extraordinary challenges and extraordinary hope that are familiar to us all. In honor of Brain Tumor Awareness Month, brain tumor survivor Kymberlee B. shares her experience and how she has coped with this devastating diagnosis.
Just before the pandemic began, I walked into the emergency room. Less than 24 hours later, I was told to call my family in. I didn’t have time to process what the doctor was saying. Only eight months prior, I was told I had vertigo at an ENT appointment, so I was shocked when they said there were two brain tumors the combined size of a kiwi fruit at the base of my brain stem. At the time, I was an assistant general manager after working 22 years in the hospitality industry. Unfortunately, I immediately had to stop working when I received my diagnosis.
Managing Side Effects
My entire ordeal lasted three and a half months from the ICU following my two-day surgery to acute care in a rehabilitation hospital. While I was there, I had physical therapy, speech therapy, vocational therapy, and psychotherapy (also known as talk therapy). My faith also helped me fight and push through while I was in the hospital.
Physically, it was definitely physical therapy that helped the most. Physical therapy taught me how to walk and go upstairs again. I still do have some vestibular balance difficulties that continue as well as trigeminal neuralgia after my trigeminal nerve was affected during surgery.
My psychotherapist helped me mentally because it is crazy to wake up after surgery and not recognize pictures of your kids. Mentally, it’s taxing because you don’t even know your new self yet after surgery.
After I was released from my rehabilitation hospital, I continued outpatient therapy.
Mentally, I still see a therapist from my local care center. He’s wonderful because life is so different now. In my former life, I was very confident, and I knew how to handle any room I walked into. Now, I don’t go anywhere socially because I don’t want people to ask me a question that I don’t have the knowledge to answer because I have a cognitive disorder.
The most degrading thing is when people say, “You don’t even look like you had brain surgery.” It takes away from my experience being at the hospital for three and a half months learning how to walk, talk, and eat again. If you only knew that I try to avoid going to a grocery store because there is too much going on.
My therapist gave me some tips to help. If I have to go grocery shopping, I avoid busy times like when people are getting off work. There are literally times when I sit in my car and take deep breaths before I go inside. I will suck on a mint or something like a hot fire candy when I go in. I take my time and make a list so I don’t walk aimlessly around the store. If I can bring someone with me, that’s even better. I only go to a store that I’m familiar with — I won’t know the aisles at a new store because it’s too confusing.
Finding a Passion
Because of my brain tumors, I can no longer work. I found what gifts I have left in me. In art therapy, I started to make encouragement cards. These elaborate cards contain supportive and uplifting messages that can be given to the brain tumor community, including but not limited to:
Patients waking up after surgery
Individuals receiving rehabilitation services
People attending local brain tumor support groups
Health care staff who work with the brain tumor community
This passion allows me to give back and share hope and joy with others at a time when they really need it. Plus, it provides me with a sense of purpose.
Attending Brain Tumor Support Conversations
I first learned about the National Brain Tumor Society (NBTS) when my therapist encouraged me to get involved with other people out there like me. He thought it would be helpful to see that I’m not the only one in the world dealing with brain tumors. My first Head to the Hill, NBTS’s signature advocacy event, was virtual, and I absolutely loved it. I felt like I was fighting for people who aren’t here, and I’m fighting for a cause.
It was through my participation in Head to the Hill that I learned about NBTS’s Brain Tumor Support Conversations (BTSC). I absolutely love participating each month because everyone seems like me. It’s not like going to the local pool where everyone is enjoying life and appears carefree, while I feel like an alien because none of these people experience what I’ve experienced. BTSC is like a family. I could mention something and everyone’s head is shaking. I’m like, “Wow, everyone gets me.”
In addition to this virtual support group, I recommend looking to your local health center to see what community resources they might have for brain tumor patients. They may have local support groups, which are helpful because you want to see firsthand how people are living with brain tumors. Because when you hear the words “brain tumor,” it’s almost like, “That’s the end.” And it’s not, it’s a new beginning.
National Brain Tumor Society equips brain tumor patients and survivors like Kymberlee with the tools and resources they need to navigate every step of their unique health care journey. Brain Tumor Support Conversations is an online support group run by the brain tumor community for the brain tumor community. This support group, held on the third Sunday of each month, is a safe space where patients and caregivers can talk about the feelings and emotions that accompany any aspect of the brain tumor experience. You can sign up to join the conversations here.