Four months ago, my headaches became increasingly worse. I advocated for a brain MRI, which showed brain tumors in the dural cavity of my brain. However, within a short time frame, I was diagnosed with leptomeningeal disease due to all ofthe symptoms I was having.
Fast forward to now, where my brain tumors have shrunk and I’ve had several rounds of radiation, I’m still left with many side effects and carefully watching for new changes.
My care team has expanded to multiple neuroncologists, a neurosurgeon, radiologists, an ocular oncologist and an ear, nose and throat (ENT) doctor. Any new change in my brain symptoms, from facial paralysis, vision loss, hearing loss, taste, numbness, tingling, headaches, falling or double vision, are all side effects that I need to monitor and speak up about. My brain has become the priority (as it should be) to focus on, yet I am not used to advocating for it. Here I am expected to be so mindful of any and all changes.
Brain metastases and leptomeningeal disease have taught me alot about taking days slower and allowing myself to need more rest. Steroids have been a pain but helpful and I hope maybe one day to be off them permanently.
This brain disease has also shown me to be extremely grateful for my support system. Without Team Sunshine, I’d be lost, unable to get to my doctor’sappointments and would be without groceries and meals. Asking for help has become essential in surviving the last few months. Strangely, I’ve gotten better at it, and I’m not ashamed of needing people.I joke how I am 36 going on 85 most days, but honestly, it’s a pretty true statement. These past six months have been such a rollercoaster of symptoms that I’ve turned into needing so much help.
To me, it’s truly scary how a brain disease and three brain tumors can destroy independence within 24 hours.
I’m looking forward to eventually getting a little of it back, maybe someday, even all.
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