Preface

Today is October 27th, 2022 14:15 central time. I’m 40 years old, a widow, and I’m currently unemployed. My husband, Dustin, died 226 days ago. Well, 227 days once the clock strikes 16:05. At 38 years and 6 days old, Dustin died on March 15th, 2022 from a WHO Grade 4 IDH Mutant Astrocytoma aka brain cancer. Prior to the new 2021 WHO Brain Tumor Grading system, he would have been classified as a glioblastoma. You know, the same brain cancer that Beau Biden, John McCain, Gordy Howe died from. 

From the onset, Dustin’s brain cancer was incurable and terminal. How much time he had was never stated because there is so much variation amongst brain cancer patients. So many variables it is truly difficult to guess how each individual will progress. This vicious cancer behaves aggressively but unpredictability. We knew, at the time, that there was a wide range of survivorship – from weeks to decades upon diagnosis. We knew the statistics and what the survivorship curve looked like for a population of people. It was grim; the five year survival was less than 5%. But there is never a case exactly like yours. Even if there was a case exactly like yours, it doesn’t mean YOUR cancer would behave like the other case exactly like yours. Not knowing what to prepare for leaves you both infuriated and hopeful. 

The marathon of living with terminal brain cancer is a slog. Some days are abusive and inflict painful trauma that you’ll carry with you for the rest of your life. Some days are hopeful, fun, and light hearted. We often had days where we felt all the emotions, sometimes all at the same time. But every single day was always full of love, even the really terrible and traumatic days. 

This is my story; the good, the bad, the ugly. This is my story as I experienced it, as I recall it from my memory, journal, or my husband’s medical records. Some people may have experienced these things with us but recall things differently or have different feelings about that experience. That’s okay but that’s their story and journey but this is mine.