Imagine waking up one morning, unaware of the date, and the year you were born. This alarming feeling was what Rose woke up feeling like nine years ago this October.
At the healthy age of 69 years old, Rose was a woman who had lived a life of optimum health. She ate nutritious meals, exercised daily, never harmed her body with substances such as alcohol or tobacco, and took optimum care of herself. As a result of working as a registered nurse for a good portion of her life, she was well aware of how the human body functioned. Rose had a large family of 5 children and numerous grandchildren, she had spent her life caring for others, whether as a nurse in the hospital or tending to a sick grandchild with strep throat. Rose was a hard working woman who had a strong work ethic with her family and professional life. She was smart, quick, and organized and she was my grandmother.
Rose’s well lived life was no match for the day she was diagnosed with an atypical menegioma brain tumor. This tumor had been growing for almost two years since it was originally seen on an MRI film. Rose hadn’t been given the results because the HMO that owned the Doctor’s office was in the midst of shutting down and the doctor’s office failed to notify her that her scans showed a well defined mass.
The morning she awoke and didn’t know what year it was, her family rushed her to the ER where a CAT scan showed a tumor growing in her brain and she required immediate brain surgery. The neurosurgeon asked if she had ever had an MRI before and she said that she had one done about two years prior. He said that he would really like to see the film before operating on her. My mother researched the old doctor who was still in business and found my grandmother’s medical records stuffed in a storage unit in a south Florida industrial park. She delivered the film to the neurosurgeon 30 minutes before the surgery was scheduled to take place and he asked how this was missed. It was on this day, one year and a half after the initial MRI scan, that she was informed of her grim prognosis. Her tumor had grown around a major blood vessel in the brain and as a result it was unable to be fully extracted because of its location. Little did Rose and her family realize that her life had changed in that instant. Even with radiation treatments, this tumor would inevitably turn into multiple tumors and cancer. She ended up with a feeding tube, lost her speech, motor skills, ability to read, and her teeth. What followed were four craniotomies, an infected bone flap, a prosthesis and consequent surgery to remove the prosthesis due to a cement leak in the area. Rose was recuperating beautifully from the last brain surgery to remove the prosthesis when she was improperly placed in a wheelchair and fell out on her head while in a nursing home two weeks after the last brain surgery. Her life ended in my Aunt’s home with brain bleeds, immense pain and seizures. Her medical problem originated with negligence and ended with negligence despite Rose’s fight for her life.
Rose’s story, like James “Rhio” O’Connor’s story is about fighting for their lives despite a grim prognosis. Both of these people had different forms of cancer but their daily lives were probably more similar than dissimilar. They knew that in order to gain a fraction of control over their cancer they would have to educate themselves very quickly in all areas of their specific disease. James “Rhio” O’Connor was a man who at the age of 61 was diagnosed with mesothelioma. This cancer is usually caused by exposure to asbestos and affects the internal cavities lining major organs. Although surgery, radiation, and chemotherapy are options for patients with this cancer, Mesothelioma presents a dire prognosis that usually overpowers any treatment. Instead of accepting to live his last few months solemnly and glumly that accompanied his prognosis, Rhio decided that he would fight and direct the remainder of his days dedicated to fighting his cancer prognosis. Similar to Rose’s scenario, Rhio’s cancer was located in close proximity to his spine disallowing the complete removal of the cancer without facing disastrous results. He chose to educate himself and just as his book is titled, Rhio “[may have been] told months, [however he] chose years.” (www.survivingmesothelioma.com).
Both families would become experts in knowing the latest treatments, doctors, surgeries and success rates in an attempt to harness their medical care and piece together their own road to recovery. When cancer strikes a family it strikes every member. Everyone becomes vulnerable and the things about everyday living that most people take for granted become difficult; life becomes an unpredictable road to travel.
Having been involved in caring for Rose during her struggle, I found that one of the most important aspects of navigating this uncharted territory is finding a doctor who is willing to talk you through the terror of caring for someone so sick. Having the ability to talk with your oncologist on a regular basis is critical to your sanity and comfort level. In the beginning of Rose’s illness I remember my mother waiting for days for a return phone call from my grandmother’s neurosurgeon. Fortunately towards the later part of her life we were fortunate to have an oncologist who helped us get through the grueling days and weeks through regular contact with emails and calls. Towards the end we were fortunate enough to communicate almost daily. This type of communication allowed us to sleep better at night; just knowing he was an email away. Even if he couldn’t cure my grandmother he was there to offer us emotional support by simply communicating with us. Although I would travel to any institution that provided any means of hope and treatment for my cancer, I realize the importance of finding a doctor who will personally be involved in my care is just as critical. I believe that personal communication with a doctor is just as important as cutting edge treatment.
When I first learned of Rhio’s story, it had two effects on me: my heart broke and my lips also broke into a smile. It is never good news to hear that anyone has to face an incurable cancer; however, Rhio’s personal fight was an inspiration. Because he was focused and persistent and he truly sought to understand and gain knowledge of his mesothelioma, he lengthened his prognosis from 1 year to 7 additional years.
Rhio’s and Rose’s stories are about doing everything possible to help the doctors care for them. I would say that one of the most crucially important things that I learned from Rose’s case and that I would do again if I was diagnosed with cancer, would be to establish a personal relationship with an oncologist or primary doctor who was instrumental to the management of my disease. I learned that there is a need for an intermediary between the doctor and the patient who can provide the kind of personal care a patient needs and that a doctor is often too busy to provide. I could not have even fathomed having to experience everything I did without the help of the doctor that we worked with. It is beyond frustrating to have to wait the entire weekend to reach your doctor when an urgent situation arises let alone 3 weeks to hear back from a neurosurgeon. By finding a doctor who is willing to regularly communicate with the family, a dire prognosis is that much tolerable when you have a doctor with a compassionate and communicative demeanor. The doctor couldn’t cure my grandmother but he could offer us the emotional support we so desperately needed. So often patients and families are not only battling the illness but the medical arena as well. It is one thing to be a caretaker of a terminally ill person, but it is another to have the knowledge and professionalism of a doctor or expert at your side. Rhio’s story explores the methods of research to lengthen one’s life but it is also necessary to have advocates alongside to prevent the helplessness one often feels in response to this assault on the human body.
Even though we cannot control the medical diseases that we face in our lives, we should strive to find solutions to treat all the areas cancer affects once it has arrived so we don’t become helpless victims. Cancer research takes time and commitment, and the James Rhio O’Connor story illustrates how we can continue to live extraordinarily even when we have been given the dire diagnosis of an aggressive cancer. This story teaches us how to live everyday with the hope of a miracle.
*This essay is based on a true story however the names have been changed to prevent identification.