
Thank you to our guest contributor this month, Tessa Whitten!
There are a few days of the year that I find myself performing my own personal floor routine of mental gymnastics – Scan Days.
As a VHL patient, I’ve found scanning for tumors to be one of the hardest parts of my journey. Honestly, it’s not the medical treatment itself – I’ve gotten used to that. It’s more about the mental strength it takes to prepare for a scan that might show a new clump of cells that will cause me to endure a new surgery, new medication, or a new “sit and watch to see if it changes”. I’m someone who thrives on being prepared. If I’m prepared, I can do anything to overcome any hardship. However, that’s the thing about living with VHL- it’s one giant trust fall. As we fall, we are hoping that the giant magnetic machine won’t show any new bright spots in the black and grey abyss of my organs. (If you’ve ever seen one of your MRI images – you know what I mean.)
I’ve been living with VHL for 23 years now. 23 years of 3 months, then 6 months, then yearly scans. I’ve come to learn a few ways to help my brain come back to me when it’s wandered into “what if everything is about to hit the fan?” territory. However, before I share my tips and tricks for dealing with relentless scanxiety, I first want to acknowledge something that I think is important. There is no tying this life with VHL in a bow. We can’t 5-step-plan our way through this unknown territory. This life of growing tumors, surgery, adapting to a new body, holding our breath, and repeat can feel grueling at times. Like, we are stuck in a never-ending loop of before scans and after scans. What I know to be true about those of us who live with VHL is that we are relentless in our strength. We are the most resilient people I know. We really are warriors.
So, when I think about my scans coming up in 2 months, this is my game plan for how to fight back against my scanxiety. Maybe it can help you, too.
1. I’m going to give myself permission to feel nervous about it. The truth is, I might really have a new tumor that pops up. The odds are higher in that direction than not. I’m going to lean into that nervousness and then remember that I am resilient. I have made it through every single heartbreaking doctor appointment. I can do it again.
2. I’m going to reach out to my people that I trust with my fears and won’t dismiss them. I am lucky enough to have a handful of people who never give up on me. They show up every time my life takes another turn. They validate my feelings and they sit in the silence. Those are the people I am going to turn to – not the ones who tell me everything will be okay. I don’t need empty positivity right now.
3. I’m going to craft my heart out. Okay – this one is not as universal. What I really mean is, that I am going to use my most helpful coping skill to get this scanxiety out of my body. As I paint, mold clay, or turn a thrifted treasure into something magical, I feel my body start to relax and my brain starts to feel lighter. Coping skills are crucial for me in this process.
4. I am going to remember that these scan guidelines were developed by top VHL researchers. This will give me so much peace. To know that I am doing what is proven to be best for living in a body with VHL. Consistent surveillance is key for managing my tumors.
5. If this all becomes too overwhelming, I will reach out to the Alliance to access their mental health resources. The ability to be supported by trained professionals who are skilled in working with those of us living with chronic illness is a relief to my tired mind.
Most importantly, I will do the hard thing of showing up to my scan. I will get the IV. I will lay on the table. I will take deep breaths. And I won’t give up on myself. I will keep conquering the next hard obstacle in front of me. Because I have VHL and I’ve what it takes to get through this – one scan day at a time.