Fighting. Yelling. Dying.

photo-45I wrote about stillness. The words are fighting me. They are jamming up and congregating in unauthorized areas and refusing to transit single file. They are being unruly.

Transitions are going on that are connected to these things from long ago. It wasn’t when my sister died of leukemia that I decided to become a researcher. It was soon after. It was after a reasonable amount of thinking things over time. I was still fighting her disease for her.

I’ll tell you about the last day.

I told you some, but there was more. Of course there was more. Every minute, every second was full to bursting. During that time, when I wasn’t at the hospital, I was taking classes. I had a morning class. I would call the nursing station and get my sister’s labs, and go in to the hospital. I was nineteen, and then twenty. I knew what the numbers meant. I was not a normal nineteen year old.

I’m not going to look up the ranges for normal hematopoietic values right now, but maybe later I will and I’ll edit those details into this post. I reserve the right. The point is, I knew from this how she was responding to the most recent round of chemotherapy, how immunocompromised she was from it, whether she was likely to need a transfusion. So I could then have these conversations with her doctors. This was all fairly routine.

Then I called one day and her white count, her white blood cell count, was nowhere near where it should have been. Much higher. So much higher. Half of what it had been before she started treatment. I asked the nurse to check the numbers, there must be a mistake. The nurse was a colleague of my mother’s and a friend. She gently checked and assured me they were correct.

The next day was the same, but the numbers were higher.

This was June. We had almost lost her at Thanksgiving to sepsis. Then she got pneumonia. That’s another story. Then she went into a partial remission. I was not a match for a bone marrow transplant. Unrelated transplants were not a viable option at that time.

I heard the new numbers on the phone and got in the car, got to the hospital and started raising hell. With people I loved, who loved us. With people who were like family. We had to start more chemo right now!

The fact was, we were at the end of the line. We had used all the drugs and combinations that were available, we got close, and everything stopped working. They told me we weren’t going to do more chemo.

I yelled. My god, I yelled. In a way I haven’t ever since, I don’t believe. I yelled at the doctors. I yelled at my mother. I yelled at them for giving up. “How can you give up??!”

Somehow, they got me off the pediatric ward, where this was happening, and out onto a balcony where I could yell slightly more appropriately. One of the doctors, one of two hematology oncologists who were my sister’s doctors, followed me outside. He looked at me so gently. He said “Nancy, some of us do this work because we have also lost someone.”

I stopped yelling.

I love every one of those people, and I apologized later. I hope to everyone. They knew. We stayed close. When my children were born, I would bring them up to visit when we were there for well-baby check ups. The same doctors cared for my children, gave them vaccines, handled ear infections. Normal stuff.

It was soon after the yelling that Linda stopped being able to see. I helped her up one last time, and led her around. She asked me why she couldn’t see. I don’t remember what I said, but I tried to comfort. She said “I love you.” Then she stopped being able to speak, though she still communicated for most of the rest of the end. The Cheyne-Stokes breathing started that night. She died at 5:30 the next morning.

My mother has asked me several times, when my career seemed to not be making me happy or going easily, whether I made a promise to my sister to do this work. I didn’t. I made a promise to myself to make a difference in this world.

I don’t really know how right now, but I haven’t stopped looking.

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