Written by Lisa Joerling – Head for the Cure Ambassador and Ganglioglioma Survivor
Managing the symptoms of my brain tumor is part of my everyday life. Since my tumor has come back, in the last year my symptoms have increased and I have started a new medicine to control the focal seizures in my right hand. The biggest symptoms I am managing currently are fatigue, focal seizures in my hand, loss of sensations in my hand, and headaches. I have adapted to each of these symptoms and side effects differently.
Focusing On Yourself
I focus on self-care each day to maintain my physical and mental health. I love to workout, and exercising has been a great way to keep my body healthy and my anxiety down. I like to use a variety of workouts; strength classes, yoga classes, cardio, and running are all helpful for me.
I have adapted to the loss of sensation in my right hand by doing hand therapy and learning how to do most things with my left hand. I have tried various ways to reduce the nerve pain in my right hand including; hot/cold packs, compression gloves and this past summer I started acupuncture. The acupuncture has been great, and my hand pain is almost completely gone. And it has helped my fatigue and seizures, as well. I also keep notes on my phone for my doctor’s appointments. This is helpful for me to be able to describe when I am having headaches and any patterns I am seeing in my symptoms.
The seizure medication I take can make me very tired and this year I focused on setting boundaries on how much I can do and when. I have to take time to rest and get enough sleep so I can function well the next day. This can be a hard thing for people around me to understand because some days I feel great and energetic, while some days it can be hard for me to do things with my fatigue.
It’s More Than Physical
A brain tumor also brings more than just physical symptoms. Yoga is a great stress reliever, massages are an awesome relaxation tool, and I see a psycho-oncologist at the Westwood Cancer Center in Kansas City to help manage the anxiety around my health.
I have a great support system of family and friends and talking about my health to them is very therapeutic for me. I often schedule something fun or do something special for myself around the time I have MRIs or appointments for a great distraction.
One Day at a Time
My advice to anyone who is also managing side effects and symptoms of their own is to be patient with yourself. Some days are good, some are bad, and a lot are in between. You are the expert on you and how you are feeling. Make sure you do what your body needs. Whether that is getting more sleep, starting to or changing your exercise, eating more nutritious food, finding more social interaction, having alone time, different types of medicines, the list can go on and on of what you need for yourself. It all happens one day at a time!