The Shadow that Glows
— Categories: Ependymoma Community Posted on October 15, 2025
Ependymoma Community Blogger Adam Holland shares his perspective on the realities of survivorship and the ups and downs he has experienced along the way. He encourages readers to reflect on how survivorship has impacted them and empowers others by sharing his experience. Adam describes his reality by sharing "Almost daily I am reminded that I am a survivor of a rare cancer, and maybe you or your loved ones are too." Read more about his survivorship experience and how it has changed his perspective on the next chapter in his journey.
Recently I was looking through the photos on my phone, many of which brought back memories that made me laugh, fond memories of families, friends, and incredible moments from this life. Then I came across a memory from this cancer journey ... the day the cancer ended. It was a photo my parents took of my radiation team and myself after I rang the bell. I was smiling with a team I much appreciated and even more so smiling that this journey was at an end.
But then over the next year or so as I recovered, a shadow grew, not a bad shadow, but a reminder of what we had been through as family and friends, all survivors now. Almost daily I am reminded that I am a survivor of a rare cancer, and maybe you or your loved ones are too. And over the years, as I settled into a calm as a survivor, my brain reminded me every once and awhile that it's been through a lot too. With each small twinge in my head, visual obscurities that I couldn’t pin down, or even simple moments where I wasn’t entirely sure what was going on. Each was small, minimally concerning, and always a thought the cancer had returned. But then each MRI scan returned displaying no sign of cancer.
Then there was the emotional toll cancer bears upon us, the ones we love, and our caretakers. I’ve said over the years that while some of us carry the physical weight and fight of cancer, there are many more who walked this journey with us who also carry the emotional weight of this journey.
Last year my family happily rejoiced over the past 10 years since I rang that bell. The cancer was gone, but the shadow was not. In the summer of 2025, we embarked on another “cancer” journey, forced to consider how much the cancer, radiation, and chemo impacted the health of my brain. It appears those little twinges of pain, flashes of lights, and slow processing were leading to a few significant episodes, focal seizures, some accompanied by Todd’s Paresis, or temporary paralysis on my right side. The cancer is gone, but the shadow remains in a very real sense both physically and emotionally, as all the feelings of the first time I heard the word “cancer” returned. There’s more mystery this time, though. The questions stirring in our minds are “What’s going on?”, “How healthy is my brain?”, “What can be done to cure it?”, and overall, “What does this new journey look like?”
Whether you are facing cancer for the first time, are facing a recurrence, or even life with the effects of cancer, the shadow remains.
Recently, I had a conversation about survival with a friend and colleague of mine. He had had a heart transplant about a year before our conversation. Though our situations are entirely different, the difficulties we each face are strikingly similar. He asked me, “Does it ever end?” The shadow was real and very much alive for him too. Not knowing exactly what to say, I told him that this entire thing is like the Hunger Games, a dystopian book about a horrific game where children fight each other, with only one surviving and winning. However, the winner lives each day of his or her life with the trauma of having survived. Surviving cancer is like the Hunger Games in the sense that, yes, you might have “won” the game for now, but on the other hand you are burdened with survivorship. You know the suffering that goes along with ependymoma, the suffering of others who are fighting cancer, and live daily with that memory.
There is a shadow that lingers for what you’ve been through or are going through, and yet, there is also the glow.
You survived or are surviving, and my question to you is, how has survivorship impacted you and how you chose to live? Yes, there may be moments of pain, confusion, emotions, but you are a survivor. In some ways we are an enlightened group, faced with a tragic and horrible disease we have overcome with a purpose and a place beyond ourselves. There is a goodness in surviving the cancer, the goodness of life, and what was taken from you for a time, was given back to you when you rang the bell.
What does your life look like as a survivor? Even with difficulties and disabilities, how can you make someone's life better because of what you've been through? Something as simple as a phone call, a text, a message of encouragement can lift the spirits of a soul in need. That's the glow from the shadow, the burden of being a survivor. I think fondly of how my parents are co-survivors, who have shared their survivorship with friends and family over the years. From the gym, to church, to old friends, they share their own stories in hopes of helping others go through their own struggles and difficulties. They took on my pain, my shadow, and now our glow.
Despite going through many challenges, as I write this, I am grateful for elements of this journey that have changed me for the better. While the cancer hasn't returned, I am quite aware of what there is to learn on this next journey. I am reminded of the glow of cancer and what there is to learn about and how to approach life ahead. There is purpose in all of this. It's far beyond me and you, and here we are, alive in this moment to make this world a better place.
Take courage dear survivor!