Just say no!

What happens next? Preferably not at all! But it has to be…

I had an appointment at the outpatient clinic of my supervising professor on Friday. She now wants to submit an application for reimbursement of the costs for the zanubrutinib. Even though this had been planned beforehand, this decision was too much for me. My heart was racing, my fingers were sweating. Say no! Just say no! A voice screamed in my head, my heart, my whole body. I am not usually one to mince my words, but I sat up straight like a schoolgirl and nodded silently. The "conditions" that prevailed in the outpatient clinic, the tone, the way people treated me, the atmosphere... intimidated me. "All right, I'll get everything ready for it! Maybe we'll have to do another plasmapheresis before approval!" So here I am: the chronically ill person. Therapy is not enough.

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“But I thought that maybe with the plasmapheresis we had flushed everything out and now everything would be fine!” I said.

A hint of a smile (the one that those corners of his mouth allow) flitted across the outer edge of his lips. "No, it's chronic. It won't go away!" He's told me this for the second time already, but I can't get it into my head. "But it has to be..." No!

I waited three hours in the hematology outpatient clinic on Monday. I was cold. I sat there wearing a thick jacket. My head felt like it was going to explode, my hands were bright red. I was excited. I wanted to tell the professor so much. I felt like I had been so poorly looked after by hematology over the last few months. I went over all my questions in my head over and over again. I listened to the older gentleman playing the online game. When he collected the coins he had won (my goodness, there were a lot of them), I had had enough. "Excuse me! Hello! Yes, can you do that without the sound? Please!" Three hours is a lot of time to observe. As always, I was by far the youngest person here. Do they all have cancer? You could see it in some of them. The exhaustion from chemo was written all over some of their faces. Others were sleeping in their chairs. One man was crying from the pain of having his blood drawn. Then it was my turn. This time I rattled off all the questions I had and showed him the results of my genetics, but some of the questions were either not answered or only briefly answered. Instead, the side effects of zanubrutinib were explained: atrial fibrillation, bleeding, serious infections. That happens often. And everything else that comes with medication.

65,700 tablets. That's how many of them if I assume that I'll live to be 80 years old. Which won't happen, but that's the goal.

"You can always take a break, after all, we don't know how it will work over the years!" (because it was only approved in 2021. Yes, keep talking, it reassures me to be a test subject, especially because normally only men over 65 get it) and again the voice: say no!

I don't want to take these pills, so what's the plan?

Pretend that I'm taking them? No, they'll probably use a mirror. And where do I put 65,700 tablets?

Emigrate? That would be nice, because temperatures above 23 degrees are enough to make me feel better. But it's not that easy.

I'm just waiting. My igM has increased significantly from 0.28 to 1.14 in four days, but it's still within the normal range. And if it stays there or at least under 3.5, then...

…I just say no!