This is my mother. She died of a glioblastoma — the same brain tumor Senator John McCain was just diagnosed with — on January 10, 2015. It was almost six months after they found and removed *most* of it. This picture was taken right after that operation.
Although my mom had the same diagnosis as Senator McCain, there is one very important difference between them. She didn’t have insurance, and because she lived in Florida, she didn’t have Medicaid either.
She had fallen on hard times — actually, she perpetually lived in hard times because of mental health issues — so she worked at a laundromat and made enough to be self-sufficient. Self-sufficiency wasn’t necessarily something she was good at, but she was doing okay at it at the time. That was what my brother told me, at least; I hadn’t talked to her in two years.
My brother is the one who forced her to go to the emergency room. She hadn’t been making sense for a couple months, according to him. But on that day he found her babbling on the floor in her hot efficiency — the AC was broken and it was summer in South Florida.
It was at the hospital that they found it — this deadly brain tumor that steals away your life, your soul, you in a blink of an eye. My brother called and told me what was going on; I threw on my “let’s fix it” emotional armor and headed to the hospital. From that point on, I was her caretaker and I had no idea what to do.
This is my mother’s glioblastoma story. Senator McCain’s story will be vastly different because he has health insurance.
The belief that having access to emergency room services counts as having access to health care doesn’t pass muster. After the emergency is over, then what? What are you supposed to do?
Just like Senator McCain, my mother had the glioblastoma removed and was prescribed radiation and chemotherapy. But she didn’t have insurance, so she could not follow through with the treatment.
No one bothered (not even the hospital social worker) to give me important information, like having a glioblastoma is one of 88 diseases that automatically qualifies you for Medicaid. I had to figure that out for myself. It took me almost three months to get her approved.
Unfortunately, before those three months had passed, she had had another emergency hospital visit due to inflammation in her brain. The steroids they put her on made her gain a ton of weight and she didn’t look like herself. I imagine this was hard on her; she always cared about her looks and connected it somewhat to her sense of self-worth. The energy and hope that she had right after her craniotomy was gone, and she was losing her mind.
My mother was lucky enough to be accepted into a clinical trial program at the University of Miami Miller School of Medicine. It is showing promising results, and surprisingly, Medicaid approved it. But she wouldn’t go. I couldn’t even get her to go to the radiation oncologist.
I can’t tell you how many appointments I had to cancel. Every day, I would say, “You are going today.” Every day there was a different reason why she couldn’t go, but the real reason that she wouldn’t go was that she was scared. She thought they were killing her. She thought I was trying to kill her.
The paranoia grew, and much of the time, it was directed at me. It was episodic at first, but toward the end, it became much more frequent. I should have been more tolerant at the time. When I think about it now, I can’t imagine being that scared.
I hope that Senator McCain’s last days are not like that. I would not wish that on anyone.
Dying in Peace
Those months would have been different if she’d had health insurance. I would have known what to do, and if I didn’t, I would have known whom to call to ask. Who knows, if she had insurance maybe she would have gone to the doctor a lot sooner rather than ending up in the emergency room.
I realize that in all probability she still would not have had that long to live. But perhaps what time she did have would have been longer, would have been easier, would have been more pleasant for her. Maybe she would have been able to appreciate her grandchildren. Maybe — just maybe — she wouldn’t have been so frightened.
In the end, it was actually Medicaid that allowed her to die in peace. I was able to put her in hospice because of Medicaid. As hard as it was to see her sleeping 24 hours a day from medication, it was better than her being conscious while she completely lost her mental faculties.
Not having insurance quickened my mother’s death and having Medicaid made it easier for her to die.
That is my mother’s glioblastoma story. Senator McCain’s glioblastoma story will be vastly different because he has health insurance. And don’t get me wrong, I am so happy he does. I am happy for him and for his family.
It has been three years since her diagnosis, two and a half years since her death. I have (surprisingly) become an activist protesting legislation put forth by Senator McCain’s own party that will take health care from millions of people.
With only 12,000 people diagnosed with a glioblastoma tumor each year, not many people understand what the senator is up against. I do. Perhaps there is a reason for that; perhaps I am meant to tell this story.
Health care is a right, not a privilege. Dying of cancer gracefully should be a right, not a privilege.
John McCain has been in Congress a long time, and he is one of the most respected legislators in Washington, DC. He has the power to protect people from having the same experience as my mother. I just hope he uses it.
This post was originally published on ProgressiveNationWNC.org.