A Warrior’s Journey
Brian’s Paraganglioma journey began long before the Spring of 2020, however he did not know it at the time. For years he would sweat uncontrollably at night and often struggled with back pain. In January of 2020 he began using a cane, off and on, to get around because of the pain in his back and hip. In the Spring of 2020, Brian’s hip and back pain were uncontrollable and it was recommended that he start physical therapy. During a physical therapy session,it was found that Brian’s neck was fractured, and he was sent to the hospital to be seen by a spinal surgeon who would then repair the fracture in his neck.
The fracture found in Brian’s neck led to the discovery of Paraganglioma tumors throughout his entire body. Shortly afterwards, his right hip fractured under the pressure of yet another tumor. He was forced to undergo another surgery to repair his hip. Knowing that he was faced with a rare and incurable cancer that has a life expectancy of 2-10 years, Brian made the decision to not undergo any more surgeries. He was never a fan of needles or medical procedures. Brian would say, and I quote, “I will not become a guinea pig.” He was steadfast in that he would live his best life, but not under the thumb of any doctor. He was stubborn and unwavering in his decision at the dismay of his family. That was until the day he found out that other members of his family, including his daughter Shelby and his mother Judy, also carried the SDHB gene. True to his character, he made the selfless decision to become what he swore he never would be–the guinea pig. It’s important to note that Brian didn’t fight fiercely and passionately for himself, his fight was for his daughter to ensure her future would be bright and impactful.
2021, the year that Brian fought the bravest fight. The pain was increasingly getting worse by the day, and bones were fracturing on his spine and neck. The side effects of this disease were wrecking his body, but he kept fighting. He underwent radiation and barely survived, but he kept fighting. He began chemotherapy and other than making him deathly ill, it had no effect, but he kept fighting. Radiology tests, blood work, surgeries, medications by the fistful, and countless doctor appointments, only to find at each visit that more tumors “popped up” and he had additional spinal fractures. As the year progressed, he began to lose the ability to live independently and needed help to do his daily activities. He lost the ability to drive and to walk without the assistance of a cane or walker. Brian began to spend days in bed and his quality of life dwindled, but he kept fighting.
2022, the year the battle was lost. Brian was in chronic pain 24 hours a day without any relief. He lost the function of his legs and became wheelchair bound. Tumors had grown up and down his spine, skull, abdomen, hip, and groin. Brian became bedbound; he was no longer living, merely just surviving. Brian was ready to go home, to be pain free, and to be in the arms of Jesus.
Brian’s life had meaning and purpose and although he may have lost the battle to cancer, the knowledge that his physicians gained will have a profound effect on many others, for his family and, most importantly, for his mother and daughter.
Brian is an inspiration to many, a fighter, and a true warrior.