The Medicine To Save My Life Existed And Doctors Wouldn't Give It To Me

All they gave me was three days left to live. Today is my 2,436th day with 3 days left. Here is how to not die by the US standard of care.

Apr 15, 2026

∙ Paid

Hello sweeties! If you didn't notice that I didn't send out a newsletter so far this week, then great and we are very much alike in what we prioritize and you can ignore the following apology. If you were pissed or wounded or sad or felt rejected or retaliatory over my unsent email, we are also very much alike (are you Scorpio?), but I think when I eventually explain what's been going on, you will understand and either way, I am sorry.

For now, I am going to add an extra month on to every paid subscription. (I am also in a really good mood for OTHER reasons, so you all can reap the benefits of my happy-drunk largesse.) I will do this after the weekend so if you are not already a paid subscriber and sign up to subscribe today or tomorrow or Friday or Saturday or even Sunday (April 19 - my wonderful brother Ben’s birthday!), you will get that extra free month on top of whatever subscription tier you choose. (Even for Founding Member/Lifetime subscribers, I will figure out a way to produce an after-life accessible version just for you, in both Heaven and Hell editions - preorder whichever you need in the comments so I can plan accordingly). And if you were hoping to get out of reading more from me and have been just waiting for your subscription to lapse, then sorry again and you have to suffer through a whole extra month of emails alerting you to stories from me and this unusual crew.

Those of you who have been around AJPT for a while already know today's writer from her take-your-breath-away punch-in-the-gut comments on most every story. I had gathered from these comments that Gina had a bigger story of her own to tell and I felt lucky when she said she wanted to tell it to you here. I love love Gina. She is not afraid to fight for anything she cares about. Which is most things. For this reason, she has often been controversial in the comments (which you know I REALLY love). The one-of-a-kind experience she writes about here will probably make it even clearer why she is the lovable fearless warrior and champion she always is. Go, Gina, go all the way.

As you have probably already surmised from the subject line, this story is intense. So the next promise I will make in this span of three paragraphs is that the feature I send out later this week will be goofy and happy-go-lucky and gossipy and superficial. Yay! And you can just wait for that if you prefer.

If you do choose to read today’s story, first you may want to brace yourselves or take a gummy or do whatever ritual you do before entering into something that might bring up strong reactions. (Speaking of which, if you are ever going into a situation with people you want to protect yourself from, this can help: Physically mimic the motions of putting on a hazmat suit and zipping it all the way up to the top just before entering. That has reduced or eliminated my stress many times - better than a cortisol-reducing supplement I also take. Plus I paid my therapist for it and it’s yours free! If you try it, let me know if it works for you also.)

Then feel free to say something nice and supportive to Gina in the comments, because going through what she has been through is a lot and putting it out there for all of us to read and see is also a lot. I can only imagine. Also, ask her questions! I had a ton of them and still have more. I know the medical aspects of this are complicated and that you may have your own knowledge about and opinions on all of them, which we would also love to hear. As I've said, Gina can take it all on and more! As can I!

OK, that was supposed to be a short intro today for Charlie’s and Andy's sakes and it didn't end up to be. Sorry again, guys!

Sincerely (and I mean that),

Jane

PS Truly last chance to vote for all the controversial books you’re even mildly interested in reading. Lena and Lindy are currently in the lead, but can Keith or Vladimir can catch up?? Next week, I will make the announcement that we will all have to live with, so have your say now!

The Cutest Shirt Ever In The Land

By: Eugenia Mancini Horan

On the day of my appointment, I put on a long skirt, long-sleeve shirt, and jacket in the August heat to cover my frail frame and cancer accessories. We set off, my heart pounding with excitement and tachycardia.

Dressed up? In my head, I thought I looked amazing.

July 7th, 2019. I asked my mother to take my photo so I could see what I looked like - people forget if you can’t walk life is mirror free. I had a sort of reverse body dysmorphia where when I looked at myself I couldn’t see the weight loss. I never felt ANY pain, so I didn’t think I was sick. I believed my doctors were exaggerating about my condition. I thought if I were dying? Certainly I’d know - I’d sense it or feel it. So I had this picture taken. And it crushed me, and just as fast - my brain erased it. So I didn’t look how I felt, and I couldn’t understand why people looked at me like I was a monster. Until I went to the ICU, and the staff called me a monster.

My husband, my mother and I arrived at the cancer center. I could feel eyes on me, but I didn’t let myself think about it. I remembered how I’d gone through that same door just two and a half months earlier. Even though I was even worse now, I was one of the only people smiling.

I wasn’t asking them for help; not this time. Today I knew how to help myself. I just needed a signature. Easy. How could my doctor deny me this treatment that could save my life? That was too ridiculous to waste energy on.

This is my second weekly chemo of the 5 I’d complete. I’m listening to NOFX at an earbreaking volume, and have been given Ativan and Benedryl to keep me from fleeing - even though I haven’t been able to walk in weeks.

Just like at my first visit, I was completely unaware of how unbelievably sick I looked. I was just over the moon that all the fighting had paid off. I held on. I didn’t give up. I had never believed I was too far gone to get here. I said this woman would fix it, and here I was to be fixed.

But I obviously wasn’t thinking clearly. My Oncologist had no idea that I had obsessively thought about this exact moment since July thirtieth. Imagining this triumph had gotten me through the darkest moments in the ICU, the scariest moments in hospice, and my late-night terrors at home. But she had no idea. This wasn’t the winning of an incredible battle against time, power, and my own body—not to her.

That is July 17th, the morning I woke up in the icu after being taken an hour by ambulance the night before. I took this picture to figure out what was on my face - horrid thing! It was a bipap mask on high, which blew air hard enough to keep the tumor covering 95% of my trachea from closing. I wore it almost 72 hours, and then was put in a coma. The picture I posted with a blog on Facebook, asking - how the hell did I get here?!? I was 46 years old and 6 months ago I’d been a normal girl.

I was showing people the trach I hated so much. When I went to hospice they put me on 15L of oxygen, which is idiotic. Idiotic because oxygen generators only go to 10 liters, so they literally had to rig 2 together, and idiotic because I didn’t even need supplemental oxygen, which would be proven the next week. So this is August 22, 2019.

I had turned her into my salvation because, honestly, there was nowhere else to go. I believed the fact that she knew me would save me. She knew I was stubborn, that I was a fighter, and that I wanted to get well. I knew her to be fair, even-tempered, and thorough. She wouldn’t turn me away and sentence me to death. She couldn’t. She wouldn’t.

I’d have ‘a pretty ugly death,’ the nurse told me. Every time I saw her after that, she’d ask me why I was so nervous. I realized I was the only one of us listening to the words she said. And I was definitely the only one of us listening to the words I said.

July 3rd, 2019. On the chemo I wasn’t able to walk, but I learned to backwards crabwalk in a panic - and that moment of panic of my realizing I can no longer sit up without keeling over is caught in this photo. I look thin, but this was after a month of work - I’m up from 75 pounds to 80.

The afternoon of July 16th. In a few hours I’d pass out and not be back to my safe nest until after 25 days in the icu and 6 in hospice. But this was me just wanting to be with my dogs. It was sweltering hot, I was losing the ability to swallow food, and I just wanted their comfort. In weekly chemo, that means there are 72 hours you are poison to people and animals - your sweat, tears, - all bodily fluids transmit active chemo that can hurt people. Strangely, a lot of people in chemo aren’t told this and it’s a huge pet peeve of mine.

I was called back to see her, and within three minutes, all these attributes I recalled seemed the opposite of the doctor that I saw looking at me. I saw it immediately. She did not believe that treatment would save me. She didn’t believe anything could save me.

The doctors only ever saw me as a dead girl.

She only believed my cancer math—those stupid numbers.

I hoped she would see what I had going for me: My mind was on, it was firing, and I was determined to live.

She wasn’t able to see past my frail, useless body.

October 10, 2019. Going to get my third Keytruda infusion. I’ve gained about 20+ pounds, I can stand, and I’m feeling fabulous. My triple lumen PICC line would be pulled that day - a surprise I didn’t know about. I’d avoid getting a port, so I used one vein to get through cancer. The PICC line being gone left me with a PEG (feeding tube) and a trach to get out still. I had pulled my own Foley Catheter (care of WikiHow directions ) a month before. I wasn’t really given care besides 1 nurse visit to clean that PICC line and 3 PT sessions to teach me to stand and pivot. That’s what disability insurance covered. Not getting an infected port in my arm, and the ability to get onto a toilet if it was directly by my bed. That is standard of care medicine in the US..

I used the most important muscles I had—those that enabled me to speak. I plead my case. I outlined and framed my argument, serious as a sermon. I think she was quite surprised to find out I had a mission. It was a word that had never passed between us before. I also think she saw the uncertainty on the faces of my husband Seth and my mother. She spoke to them, and I flinched as she saw the shrugs and uncertainty.

“God damn it,” I thought. “Are they trying to get me killed?”

November 3. My trach is out. My band-aide makes fart noises. Both it and my feeding tube were pulled out, and left to heal ‘from the inside out’. No stitches. But I was posting on Facebook what I called the delicious bedhead series.The posting/journaling to Facebook served 2 purposes:It held me accountable for my actions. I would go to appointments I didn’t want to because I didn’t want to have to write I was too scared.I had said the day before I went to my first oncology appt - if I’m going to do this, yall are going with me. Every detail I blogged. And I was determined to blog it real time, which I would learn made it all the more… unreal. Especially the surprise ending!

I didn’t have the luxury of not betting it all. I wouldn’t hear of anything else or look at any other option; I had found my person. I intrinsically knew it was treatment or death, so I’d picked my side and never wavered. There was no other side. I was too sick for chemo. Even if I had been willing to take it, it would certainly have killed me. I had outlived a few death forecasts in order to sit in this room.

June 15th, my second ‘baby dose’ of chemo. I was blasting NOFX, was on Benedryl and 2mg of Ativan and terrified. My doctor had said with chemo I might live 3 months, without it one month. She said she’d give weekly doses of chemo cut in half, because if any of the tumor that was covering 95% of my trachea at that time broke off, I’d choke to death and I was unable to be intubated so I’d have ‘a pretty ugly death.’ Every time I saw her she’d always ask me why I was so nervous. I realized I was the only one of us listening to the words she said. And I was definitely the only one of us listening to the words I said..

She looked at me, her face blank, as if she wanted it to seem like she was considering it.

She said, “No.” …and continued to.

**October 25, 2019. Eating cookies at Starbucks. This was after just 2 immunotherapy sessions.**

For over thirty minutes we volleyed. Not only did she refuse, but she actively tried to dissuade me from this drug. But I could not be swayed. I was fueled by adrenalin. I had never considered the possibility that she might say no, because it was so obviously black-and-white. She was a doctor. Their duty is to at least attempt to save lives—to do no harm. This seemed like the ultimate harm. I was present and I was fighting. How could it be “too late?” How could I be “too far gone” if I’d gotten my ass into that office to beg?

I didn’t buy her stance that it could be considered cruel to prescribe it to me, likely because it was bullshit. If I died from pneumonitis or colitis, then so be it. But I would be damned if I died from neglect, waiting for cancer to shut down my lungs, from not being brave enough to try… or from her not being brave enough to try.

I pulled out my own Foley Catheter (care of WikiHow directions). I wasn’t given care besides one nurse visit to clean the PICC line and 3 PT sessions to teach me to stand and pivot That’s what disability insurance covered: Not getting an infected port and the ability to get onto a toilet if it was directly by my bed. That is the standard of care medicine in the US.

I had nothing to lose. I started pleading and could not stop. I talked about my deepest desires. I said that I wasn’t done with my life, that I could do this; that I would fight harder, longer, relentlessly. I would live. I didn’t want to leave Seth. I didn’t want to leave my dogs. I couldn’t bear the thought of my mother and father losing their child. How could she stand it? How could she sentence me to death? I didn’t stop. I pulled away from Seth and my mother, both of whom were trying to catch the snot running from my nose. I laid myself bare. I was livid. The past seven months flashed before me, and the memories of my mistreatment lit me on fire. I would not end like this.

I was two weeks past my two weeks to live. I was already on borrowed time. Who was she to just say no? I was asking her to prescribe it, not to pay for it herself. I wasn’t asking for heroin or crack. I wasn’t asking for cash or prizes. I was asking for a chance—just ONE chance—to keep my life. I was asking her to do her job, not for her opinion.

This picture was taken on my last night in the icu before hospice. My husband Seth was trying to learn how to take care of me (suction/clean a trach) ALL the stuff. Because in 24 hours it would be just him and I in my house. No hospice people. They left as soon as I was put in the bed handed him a stethoscope, said they expected I had about 72 hours. And they’d be back… in 3 days. So, critically ill me and my bass playing now caretaker husband had something to prove to the people. So we did. We stayed in hospice 6 days and got the car full of supplies that would cover me the next 2 months. Everything free, we ordered a LOT! The first day in hospice was the first time in 25 days I’d been able to have a conversation with my husband. My trach was muted so I couldn’t talk in the icu. It was then he heard of the abuse I went though he had no idea of. It was also in 3 days of seeing me improve - the first he dared to think I wasn’t full of shit when I said I believed I could get 100% better. Most people thought it was a stage of grief. Never was.

I called once again on my philosophical training to assess the situation. How do I best argue for my life? I knew her stance was based, if not on personal bias, then most certainly on the bias of the medical system. If there was a crack in her agreement with the system, I might still have a shot. I could not convince her I would survive. That had been my error. Asking her to believe in me had been a nearly fatal mistake.

So I tried to convince her of the death I thought I deserved.

At 60 pounds, the day before starting the medication I had asked for all along.

TO READ THE REST OF GINA’S STORY AND TO SEE PICTURES OF HER NOW, PLEASE SUBSCRIBE AND THANK YOU SO MUCH.

Continue reading this post for free, courtesy of Jane Pratt.

Or purchase a paid subscription.