Gratitude in Hell: Rage is the New Namaste.
I explained to my husband this morning that as the chasm of time stretches, there’s one side that is ‘2019 poorly defined adenocarcinoma stage 4 ECOG 4 salvedge patient’. The other side is 2024 patient is ‘healthier and more youthful appearing/acting than most her age’. And I’m on a high wire between them, looking at each, equally puzzled by either at times.
I feel to the general public I’m in no way considered a cancer survivor. Most cancer patients avoid me. At times it bothers me, but not enough to change. I think to be accepted, I’d have to belly up and embrace American oncology which I refuse to do. It didn’t save me. Only if you twist the truth that every doctor left me for dead, and leave out that I saved me by prescribing myself Keytruda that my doctor fought me on after I ran away from being starved in an ICU. So I get it. Most cancer patients fight cancer. I never did. I only ever fought the medical system that had no use for saving me. So I don’t have the lingo down. I can’t swap chemo stories, compare side effects. I had what was essentially 1 dose of chemo split into 5 doses. I know it stole my mind. I know that was the first time I hoped I’d die. I need my mind at all times.
Now I’m an island, a post cancer loner. I break the rules, I say I ‘had’ cancer, that I’m cancer free. I’m supposed to say complete remission, but fuck that. Theres no cancer in my body. The body, is free of cancer.
Words freaking matter. It’s what I see being lost in this generation. Words dont mean anything. A lie isn’t ‘really’ a lie. A truth doesn’t mean it’s true. You can say lies that people make true. Fucking chaos. Stupid.
I don’t raise money for cancer anything, because I know cancer generates more profit than anything else on earth, only slightly behind GLOBAL OIL in the #1 position. When’s the last time you donated to Mobile or Exxon? The government has millions set aside for cancer. It’d seem generous, almost, if it wasn’t pocketing billions.
I do, and have done hundreds of hours of research on cancer. Now, I don’t live in fear. Instead, I live with anger. Not even about cancer. I live with, what I could only describe as ‘motherfucking rage’ at that whole year of 2019.
Down, anger. Good boy.
This is only to say now is usually about writing about then, because I don’t want the then in my now. I don’t write about now anymore because I live it instead. It prevents crossing streams. I live a happy life, because it is a choice.
Yes. It is.
It might seem like this consumes my life, but it’s the opposite. It consumes my blog so it doesn’t affect my now. Why the hell would I blow a bonus life living in the then? I worked for this.
I assume I’m an interesting experiment because I’m such a unique cancer case. An extreme case, yet with as little oncological influence over it as possible. I have prepared math, because I assume it will be in the ‘after‘ chapter of my book. The after I will write upon choosing a publisher, but it is supposed to represent a quick ‘and then what happened?’ for the reader. So I’m to write a chapter summarizing what has happened since December 2019…
And I feel real bad about it. Like I’m stabbing Santa in the face at a children’s christmas party because everything went just a different ass over tea kettle when I stopped dying.
What a terrible summery to have to write. “I have found that at no other time was I treated with any kindness or dignity than at the cusp of death. Neither before as I descended there, nor after as I ascended back to health. Especially not then, as the healthier I have become, the more the medical system, shall we say, resents my existence. I am their albatross. Living proof of their errors, their negligence and a haste to throw away human life that isn’t over but taking up a bed…”
Yeah, I won’t write something all proper-y like that because of, as I stated, the motherfucking anger.
I unplugged. For not the first time in my life, undoubtedly not the last. I saw an oncologist just about 12 times. That’s not a choice that would work for everyone. At first I did the norm… you’re dying so you go in to hear about how you’ll never get better, right after you do the thing to make you better.
That’s a stage thing. In earlier stages like stage 1 or 2, they’ll say the thing killing you is making you better and how you’re doing great.
In any case, and in any stage, it’s equally guessing. I think that calmed me. I live by the 50% rule now. Odds of getting cancer? 50% - same as you. Meaning, you either will…. Or won’t. What use is the smaller percentages? I had a 4% chance of being here today, which was reduced to 0%. Does that make me a freaking ghost? No. Medicine just comes up with numbers based on averages of people who aren’t you. What’s interesting, I found, is that I was TREATED in a way that reflected the 4% survival rate. I was treated to have a 0% survival. And I called a foul. And the doctors got… real mad.
But I got lucky. I got better, and then a pandemic hit the globe. Simultaneously. So I was forcibly unplugged, and I learned to self-soothe and not need to have a doctor to tell me I was going to be ok
Because I realized: that’s not *exactly* what she does. I squeaked in to see her one more time in July 2020, then she left. And left me with the Crystal Pepsi of oncologists. You think she’s going to be awesome and impressed by your overcoming death… you think she’s actually read your file or have an understanding of how to be a doctor or how medicine works.
No. She was just clear bullshit. So I quit. For terminal cancer, I had 12 appts. And that was plenty. Now I can be happy, ghoul free.
No one has a really good time in Hospice. I accept that. I also feel like there’s a great amount of pressure on me to say that I’m grateful because I left hospice. I was only there 6 days, 1 day short of the week I’d planned because my husband hated it more than me. That’s where the line tangles… because *I* begged to be put in Hospice so I could escape the hospital that was hurting me. In escaping, I had to pay the check - so to speak - that month in the ICU cost me.
What does that mean? It means you can imagine a 60 pound girl. I can say I was fed 4 times in 25 days, and not in the seven days before I left for Hospice. Which is why that week I begged. I begged like my life depended on it. I begged - with no voice because my Attending wouldn’t allow me to HAVE it. I begged for hospice. I held up a god damn sign that read ‘hospice - please!!’
There is no dignity in cancer. No pride. No there is only surviving.
And I’m the only person in the world at that time who knew I was trying to save my own life. That I would not go out like that. That I would not allow people to end me, just because they could. They say lung cancer is the deadliest cancer in the world. Then don’t say that might have a bit to do with how it is (or isn’t) treated.
You probably don’t know what it’s like to have a doctor scold you for not being grateful he let you go to Hospice. Oh boy. I do. That motherfucking rage.
Gratitude.
But does that mean you understand that there was a moment in Hospice, which was my living room and my husband, that the dextrose drip that numbed my hunger that whole month just wore off. And the hunger was something so big it had no words. There is nothing I could write to explain what it felt like to be as close to actual starvation as I was, and finally truly FEEL it. Mind you, those were the same moments allllll the mind and body numbing drugs wore off, so I felt everything, and could think clearly.
This is why I will repeatedly state my history with panic saved my life. My brain couldn’t process it. No longer with drugs to dull it. I white-knuckle bare-bones my survival.
And I knew even then there were people who chose to do that to me. That chose to not LET me have food. Or my voice. Who watched me shrink, and as physicians were well in their depth to know what they were doing. They were letting me die. That’s passive voice. Active voice: they were killing me.
I mean, if a dog is in a kill shelter, do you just not feed it the last week of its life? Or would that be considered cruel? Even IF he was going to die day 7. Feed? Don’t feed?
Your answer, matters.
Will you be yet another person to try to defend the doctors, to stammer some…. Well… they …
You won’t. I won’t let you. I take no pride in people thinking so little of my life they threw me away. Starving a person isn’t easy. Obviously. With the dextrose drip it was taking weeks.
But the cancer. What about it? Had it, but it wasn’t killing me. Starvation and malnutrition were killing me.
But I was in bad shape, and in all likelihood…
What’s that? You want to repeat that into my good ear?
Oh I’m sorry. I don’t want to give you the impression anyone in the ICU gave a fuck.
Blah blah blah. Like letting air out of a tire, I have to let the rage out in tiny hissy bursts.
Or, in the case of my book, 170,000 words of ‘how dare you?!’
I’ve always been aware of my worth. Which is why I don’t let anyone try to defend what was done without retort. Because I DO know what that Hospice moment feels like. Hunger so distracting I am drowning in need for food. But my stomach hasn’t been used in a month and we don’t know if I can swallow. We don’t know if feeding me will kill me because my intestines have 2 blockages. I can’t stand, sit, roll over, hold my head up, cry or hold my phone because it’s too heavy. Not cancer. Starvation.
Now-ish vs then. The second picture is 3 days before I started Keytruda, almost 3 weeks of weight gain since the icu (I’m aware I’m hideous. You be aware, again - it wasn’t cancer. That, that is purposeful starvation with no intent to not kill the girl in the left-side photo. Rage. Gratitude.)
And I was in withdrawal like a junkie. Fentanyl. Propofol. Versed. Ativan. Etc. etc.
Gratitude.
I am grateful for the rage. It’s what kept me alive. It’s likely the only thing that kept me alive that 6 days in hospice. Love is grand. But sometimes you need the iron of rage to push against, to pull yourself up. You need to say, “I am mad as motherfucking hell those assholes thought so little of me.” And not apologize for ‘language.’
Now one would think I would seek some therapy to heal my mind. To have peace.
That would seem like the answer. Even if you hadn’t met any of the parade of glorious idiots that I’ve seen to fix my brain since I was 8.
Grateful.
The abuse I received in their care made me into the girl who knew without doubt a doctor could and would neglect to ‘care’ for a patient, and perhaps do the opposite. They saved my life by being horrific humans that punished me because my brain works differently. And because I wouldn’t stop questioning everything.
Because, why? Why is it so wrong that my brain panics? That I get nervous? Is it wrong, or is it just who I am? Considering a great deal of my anxiety was created by a therapist (mental/physical/sexual abuse from age 13-16), it seems like a big pile of not my problem. People can, and do, have problems with MY anxiety. But to me in this picture they are the only ones who have a choice.
Yes. My days of not being a people-pleaser started quite early. Because, again - why?
Why on earth should I need to please people?
It’s all so bizarre.
The point is, unless my anger is upsetting my life, why would I pay someone to take me? I have no money. Would they do this for free?
I love that joke.
It would be the same as becoming religious. I am pretty religiously ignorant, because it just wasn’t in my life. But there seems a lot about death. How it’s not such a bad thing (if you lived right). It seems it’s a pretty happy thing.
Well, hell. I fought so hard to live because I DON’T know what happens when I die, and I don’t want to find out. Maybe I would have fought less if I thought I was going ‘someplace better.’
I know I wouldn’t have fought, because I had initially agreed to not have a surgery they said without j would die in 3 days. 12 hours later I became terrified of dying. Agreed to the surgery.
It was an unnecessary surgery I wouldn’t have died without. It left me with 6” less small intestine and a scar from my naval to my pubic bone.
I raged.
Gratitude.