Sunday Introspective by Emi Yamamoto SubX.News®
Yesterday John asked me a question I’ve been turning over all night.
Am I healthier now than before I knew I had cancer?
I said: worse now.
It took me a while to say out loud. But it’s true. And saying it didn’t kill me.
The strange thing is that the cancer was already there. It didn’t enter my body the day somebody gave it a name.
What came after the name were the tests. The fasting. The medications. The things I have to drink before another test. The appointments. The waiting.
Those are the things that weaken me.
I went to the emergency room because of the pain, because of the tiredness, because I couldn’t take it anymore. And then we started finding things.
First one. Then two. Then three.
Rectal. Liver. Lungs. Lymph node. Something in a kidney.
Each one becomes another fact written somewhere in my medical record. None of those words is me.
What I’m actually asking
So maybe the question isn’t will I live.
Maybe the question is: what kind of treatment am I going through from here, and what is it supposed to accomplish?
If there’s no guarantee, if there isn’t even a real possibility that something will make me better, why do I have to go through it?
That is not giving up. That’s finally asking the question out loud.
John asked it another way yesterday. If two or three months go by, after all the money and appointments and medications and tests and attention, and physically I am worse, then why are we doing it?
I need an answer to that.
Not because I want to stop living.
Because I want to live.
The anger I still have
And then there are the people answering that question who have never met me.
The insurance company denied the PET scan.
They don’t take care of me. They don’t live inside my body. They don’t know what I can tolerate or what possibilities I have. Yet somebody there can still say no.
If the PET scan hadn’t been denied when the doctor wanted it, would we have known more, earlier? Would my treatment have been different?
Those are questions I can’t make disappear.
I pay for my insurance through my work. I do everything I’m supposed to do. I am the patient.
Somewhere in all of these decisions, shouldn’t that matter?
The small humiliations
Yesterday I felt that I needed to go to the bathroom.
I stood up. It was already gone.
John was sleeping. The kids were out. Maybe that made it easier.
The day before, they were moving around the house while I went back and forth, changing my diaper again and again.
People talk about dignity like it’s a big philosophical idea. Sometimes dignity is much smaller.
It’s being able to stand up in your own house. It’s being able to leave your house. It’s knowing whether you can make it to the bathroom.
It’s not having your entire world reduced to the distance between your bed and a toilet.
Thursday at 11:20
That’s what I want to explain at the doctor’s appointment on Thursday.
I am an active person. I cannot spend whatever time I have lying around. If this is the end of my life, let me do my things at the end of my life, not sit in a bed waiting for the next appointment.
So I want to ask about the bag again.
With the bag, maybe I could have gone out with John yesterday.
Maybe I could take my camera.
Maybe I could go somewhere, find a clean private place when I need to change it, take care of myself, and continue with my day.
Maybe I could take pictures again.
That sounds small until you’re the person who can’t leave the house.
There’s a medical term everybody used when this started. QOL. Quality of life. They talked about it in the beginning.
Now I want somebody to measure it again. Not just my tumors. Not just my blood. Not just what appears on a scan.
Me.
About the lawsuit
John says we should sue over the denied care. He told me that if I start something and I’m no longer here, he’ll keep going.
I don’t know yet what will happen with that. But I know why the question exists.
It isn’t only about money. It’s about who is responsible when somebody outside the room can interfere with decisions being made by the patient and the people actually treating her.
Would earlier testing have changed anything? I don’t know. Would the PET scan have changed my treatment? I don’t know.
Those questions need evidence, not anger. But I have a right to ask them.
I don’t want to waste my life
Near the end of our conversation yesterday, John asked me what I wanted to do. Nature pictures? Something else?
My answer came out very simply: I don’t want to waste my life.
Maybe that’s the answer I’ve been trying to find.
I don’t know how long I will live. Nobody can promise me that. But living cannot mean spending every remaining day preparing for a test, recovering from a test, waiting for an appointment, or being too afraid to leave the house because I might have an accident.
Treatment should be helping me live.
So on Thursday I want to ask for something different.
Don’t only tell me what you can do to the cancer. Tell me what you can do for me.
Help me get out of this house. Help me take my camera. Help me stand up without being afraid.
Help me use whatever time I have as my own time.
Because whether it’s six months, six years, or something nobody can predict, there’s one thing I know today:
I am still here.
And while I am here, I want to live.
