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Humanizing Brain Tumors: Strategies for You and Your Physician: Humanizing Brain Tumors: Strategies for You and Your Physician

Humanizing Brain Tumors: Strategies for You and Your Physician
Humanizing Brain Tumors: Strategies for You and Your Physician
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table of contents
  1. Cover Page
  2. Halftitle Page
  3. Title Page
  4. Copyright Page
  5. Dedication
  6. Contents
  7. Preface
  8. Chapter 1: Frontal Lobe: The Man Who Lost the Will to Work
  9. Chapter 2: Left Temporal Lobe: The Man Who Found Creativity
  10. Chapter 3: Right Temporal Lobe: The Woman Who Could Not Quench Her Thirst
  11. Chapter 4: Foramen Magnum and High Cervical Cord: The Woman with Rotating Paralysis
  12. Chapter 5: Brain Stem: The Nurse Who Started Having Double Vision and Headaches
  13. Chapter 6: Cerebellum: The Woman with Pigmented Lesions and Worsening Balance
  14. Chapter 7: Pituitary and Stalk: Visual Loss and Hormonal Alteration in a Young Transgender Woman
  15. Chapter 8: Tumor Afecting Hearing: Trials and Tribulations
  16. Chapter 9: Hypothalamus and Third Ventricle: The Woman Who Lost the Ability to Play Sudoku
  17. Compendium
  18. Glossary
  19. Biographies
  20. Acknowledgements

PREFACE

SOMA SENGUPTA, MD, PHD, FRCP

In 1884, Rickman Godlee surgically removed a glioma from a patient in London, England. Although it was an important moment in the history of medicine, the patient unfortunately died twenty-eight days after surgery due to meningitis and other complications. Neurosurgery has come a long way from the times of Rickman Godlee. Without question, then as much as now, the true heroes are the courageous patients with brain tumors and their critical support network of family and friends. Dr. Forbes, Dr. Mahammedi, and I sincerely hope this book will serve as both an educational reference and a source of inspiration for brain tumor patients and their families. We are clinician-researchers who share the scientific and medical community’s relentless pursuit of perfecting treatment for every type of brain tumor. Dr. Forbes has had a family member affected by a brain tumor, and I have had family members and a close friend affected by brain tumors as well.

With the COVID-19 pandemic causing lockdowns, 2020 and 2021 were unusual years that changed the way we educated students. We felt the need to create a project for medical students who could no longer rotate in science laboratories or clinical settings but still yearned to learn. What better way to learn than writing and thinking about patient journeys? We also felt the need to tell the real stories of our patients, who felt that their symptoms were initially ignored before they were diagnosed with brain tumors. Often, family and emergency room physicians, and medical residents, fellows, and students are not aware of the different presentations brain tumors may have in patients have. In addition, brain tumor patients need a place where they can feel “not alone”—where others have been through similar experiences. Patients with a new brain tumor diagnosis may also want to find a place of connection with resources they can consult. We hope this book will serve as that place.

To this end, we wrote a book with nine case studies, and we had a diverse team contribute, including physicians, medical students, and residents. It is important that the next generation of physicians is exposed to the journeys of patients. If they cannot be at the bedside, they can learn through the trials and tribulations of each patient. This was a highly interactive book where we interviewed the patients and or their families to piece together the story from the perspective of the patient and their family members.

When I discussed this project with my collaborator and friend, Jonathan Forbes, we never imagined that we would actually be where we are today. As a neuro-oncologist, I wanted to be more than a person who recommended chemotherapy and clinical trials, while Jonathan Forbes, a neurosurgeon, wanted to be more than a person who resected brain tumors. We both wanted to understand our patients, do translational research, and educate students as the next generation of scientists and physicians. We decided to produce this open access book from the generosity of patients and their families, in particular, Columbus (Chapter 2), Jan (Chapter 3), and Beth’s (Chapter 5) families.

Columbus, Jan, and Beth were my patients. Each wanted their experiences shared and their stories told. In the pages that follow, you will meet Columbus, the brave veteran who became an artist. He traveled from Atlanta with his wife, Val, and their daughters to join in the Walk Ahead for a Brain Tumor Cure walk in 2019, a major annual event that raises funds for the University of Cincinnati Gardner Neuroscience Institute Brain Tumor Center. You will meet Jan, the child who loved watching NASA rocket launches at Cape Canaveral, who liked lobster fishing, traveling, playing musical instruments, and who so bravely battled cancer twice. And beautiful Beth, the dedicated bone marrow transplant nurse, whose life was snuffed out like a candle’s fickle flame. All of these wonderful patients, and many others, never cease to inspire.

Dr. Oliver Sacks, a British neurologist who died of cancer in 2015, once said: “I feel intensely alive, and I want and hope in the time that remains to deepen my friendships, to say farewell to those I love, to write more, to travel if I have the strength, to achieve new levels of understanding and insight.” This is what many of our inspiring patients have told us. So, we dedicate this book to patients, their families, and their journeys. We, as physicians, journey with them. As the former U.S. Senator Ted Kennedy, who died of a glioblastoma, once said, “For all those whose cares have been our concern, the work goes on, the cause endures, the hope still lives, and the dream shall never die.”

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