Despite sharing the same diagnosis as Senator McCain, there was a crucial difference between their situations: my mother lacked health insurance and, residing in Florida, she wasn’t eligible for Medicaid either. She had endured tough circumstances for years, primarily due to mental health challenges. At the time, she was working at a laundromat, earning just enough to get by. Unfortunately, I hadn’t spoken to her in two years, so I relied on my brother for updates on her situation.
It was my brother who insisted she visit the emergency room. He noticed she had been acting strangely for a couple of months. On that day, he discovered her incoherent and on the floor of her apartment, where the air conditioning had broken down during the sweltering South Florida summer.
At the hospital, doctors revealed the devastating diagnosis—a brain tumor that can strip away one’s life and essence in an instant. When my brother called to share the news, I donned my emotional armor and rushed to the hospital, ready to assume the role of her caretaker, though I felt utterly unprepared.
This is my mother’s story with glioblastoma. Senator McCain’s experience will be markedly different due to his access to health insurance.
What Happens Next?
The idea that merely having access to emergency room services equates to having comprehensive health care is misleading. After the immediate crisis is resolved, what are the next steps? Like Senator McCain, my mother underwent surgery to remove the glioblastoma and was prescribed radiation and chemotherapy. But without insurance, she couldn’t pursue the necessary treatment.
No one, not even the hospital’s social worker, informed me that a diagnosis of glioblastoma qualifies for Medicaid coverage. I had to navigate this maze on my own, and it took me nearly three months to secure her approval. Unfortunately, by the time those months had passed, another emergency hospital visit occurred due to inflammation in her brain. The steroids prescribed caused significant weight gain, altering her appearance and exacerbating her distress. She had always placed importance on her looks, linking them to her self-worth. The initial spark of hope following her surgery faded, and she began to lose her grip on reality.
Too Late
My mother was fortunate to be accepted into a clinical trial at the University of Miami Miller School of Medicine, which showed promising results and, unexpectedly, was approved by Medicaid. Yet, she refused to attend. I struggled to persuade her to go to the radiation oncologist, canceling countless appointments. Each day, I would say, “You are going today,” but her fear overpowered her will to seek treatment. She believed the medical staff was harming her and thought I was complicit in that harm.
Over time, her paranoia intensified, often directed toward me. Initially episodic, it became a frequent occurrence as her condition deteriorated. In hindsight, I wish I had been more patient. Imagining her terror now is heartbreaking.
I hope Senator McCain’s final days are not marred by such fear.
Dying in Peace
Those months would have unfolded differently if my mother had health insurance. I would have known what steps to take, and if I needed guidance, I would have known whom to ask. It’s possible that if she had had coverage, she might have sought medical help sooner, rather than winding up in the emergency room.
I understand that, realistically, she might not have had much time left regardless. But perhaps the quality of her remaining days could have been improved. She could have savored time with her grandchildren, and just maybe, her fear would have diminished.
Ultimately, it was Medicaid that facilitated a peaceful passing for her. The program allowed me to place her in hospice care. While it was painful to see her sedated and sleeping around the clock, it was preferable to witnessing her suffer as she lost her mental faculties.
This is my mother’s glioblastoma story. Senator McCain’s journey will be profoundly different due to his health insurance. I genuinely wish him well and am glad he has access to the care he needs.
Three years have passed since her diagnosis, and two and a half since her death. As a result, I have unexpectedly become an activist, protesting legislation proposed by Senator McCain’s own party that threatens to strip healthcare from millions.
With only 12,000 people diagnosed with glioblastoma each year, there is a lack of understanding regarding what Senator McCain faces. I feel compelled to share this narrative. Access to healthcare is a fundamental right, and a dignified death from cancer should be afforded to everyone.
Senator McCain has been a long-standing figure in Congress, respected by many in Washington, D.C. He holds the power to protect individuals from enduring the same ordeal as my mother. I sincerely hope he leverages that influence for the greater good.
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In summary, my mother’s experience with glioblastoma starkly contrasts with Senator McCain’s due to her lack of health insurance. Her journey was fraught with fear and uncertainty, while access to care can significantly alter the outcome of such battles.