Abstract
A life is not important except in the impact it has on other lives.
Francesca was a simple woman in her fifties, with little formal education and a sharp intellect. She was profoundly religious and believed in a divine plan for human life. She was happily obese, a great cook and foodie, she had helped our family in everyday household management for many years. For us, she was much more than a housekeeper: she was our big sister.
In August 2004, after several episodes of epistaxis, she underwent a biopsy of the nasal cavity; when the pathologist called we were stunned: “It's a melanoma of the etmoid mucosa,” he said, “immunoistochemistry is under way but I'm quite certain about it.”
While those next to her went through a phase of denial and anger, Francesca took the diagnosis and prognosis with a serene disposition, fully trusting her oncologists and what she perceived as “the God's project”: she was ready to undergo the necessary treatments but also ready to accept their possible failure. She never asked for a miracle, and never asked herself or others “why is God doing this to me?” She could find a transcendental meaning in every incident of life. She even considered her strong ties with our family of two oncologists and their children as signs of God's love for her.
From September 2004 to October 2009 Francesca had an ethmoidectomy and then four more increasingly radical surgeries, resulting in the demolition of her nasal passage and part of her frontal bone. After her second and fourth surgeries, she underwent conformational radiotherapy temporarily achieving a good local control of the disease. Then the cancer progressed to the adrenal glands and the mediastinal nodes. Unexpectedly, subsequent chemotherapy produced a complete response. We asked repeatedly for histologic revision, and required a CD 117 evaluation, hoping for a disease responsive to Imatinib or other target therapies. 1 Each time the pathologist manifested his surprise at the fact that she was still alive.
Nobody has ever heard her curse or even complain about what was happening to her; the simple acceptance with which she approached the incremental disfigurements of her face was astonishing. She carried a wide dressing covering the large hole that the surgeries had created between her forehead and the base of her nose. Four times a day she performed, by herself, the exhausting washouts with normal saline required to clean this enormous facial cavity. In front of the mirror she took off the gauze; in order to dress her wound she was forced to observe her internal anatomy and see mucus and necrotic material flow out of it together with the washing liquid.
To witness these procedures was literally terrible, yet her nonchalance made it acceptable to our own children, who could watch with no fear. We asked ourselves how she could accept such disfigurement. How could she glance at that enormous hole, from which one could practically look inside the cranium? Would she have been able to bear what was for us unacceptable, without her simple, yet unshaken religious faith?
Despite incessant care, soft tissue infections and meningitis were inevitable due to the anatomical modification of the maxillofacial structure. From the fall of 2008, these infections forced her to need periodic hospitalizations in the Infective Disease Unit of the local hospital. She came out of them emotionally and physically exhausted. As soon as she got better she tried to resume her everyday life and work as if nothing had happened, yet she had no illusion of being able to avoid another disease recurrence.
The wedding of her much-beloved daughter had been planned for July 2009 and nothing would have stopped her from attending it, not even the melanoma. The previous May she had decided to undergo the last surgery, a partial gastrectomy for a submucosal metastasis. In between hospitalizations she organized the wedding, shopped for her and her daughter's outfits and gracefully ignored insistent stares at her face.
She found the ceremony wonderful: she said that her daughter looked like “a princess,” she was happy for every little detail, from church decorations to the priest's sermon. While cheerfully criticizing what she thought was a too sophisticated dinner menu she became aphasic. Subsequently headache, chills, and high fever returned and she was once again hospitalized.
At this point, she felt she had completed everything in her life: she was serene, peaceful and unusually refrained from asking to go home. We sent her our children's drawings that said, “We can't wait to hug you again!” She was touched and cried. She asked that they be framed. The following days she progressively worsened due to a frontal brain abscess and her sharp mind failed. In a lucid moment she called to her bed all her family and she said her goodbyes to each of them. She was sedated and calm when she died: her family asked that our children's drawings be buried with her.
In our experience as medical oncologists we have rarely seen an “appropriate death”, as Weisman defines it. 2 Despite a terrible clinical picture, Francesca lived her life fully until the end, fulfilling her dreams and maintaining her own autonomy. She spent her last days pain-free, surrounded by her loved ones, from whom she was able to take her leave with nothing left unsettled.
Although studies show that fear of death is higher for those in her age range, 3 she faced the disease and her death with calm resignation, without revealing moments of an end-of-life despair, and certain that the meaning of her journey didn't end with death.
It has been an honor to be near her during her last 5 years of life: her story, with her courage and the dignified acceptance of what the tumor had inflicted on her, was an incredible gift that made us better doctors and persons. It has been the confirmation that sometimes “our patients are our best teachers.” 4
Footnotes
Acknowledgments
We thank Wellesley College's Catia C. Confortini, Ph.D., for assisting in the revision of the manuscript.
Author Disclosure Statement
No competing financial interests exist.