Expectations

So, just want to talk a little bit about what I expected when I found out Robin had Acute Lymphoblastic Leukemia.

I expected her to be bed-ridden. Tubes of poison hooked up to her and dripping into her all the time. I expected her to have to endure this without much interaction, that she’d be put into the machine and then more or less abandoned.

I expected her to endure long days of nothing, just waiting for her body to absorb and process the poison.

I expected that she could be cured, and then we would go into a preventive mode, and we could sort of move on.

I was right, but I was also wrong.

She spends a lot of time in bed, but not because she’s hooked up to half a dozen machines. She does it because she’s weak. She’s literally being poisoned, and her body is just weak.

She had an IV in her for about a week and a half, and then they removed it. They had to put her back on it because she caught a little strep infection, and her fevers spiked, but if that hadn’t happened, she would have been free of any machines.

Yeah, she’s alone in her room, but she rarely is left alone in there for more than 30 minutes. Someone is always in there, taking vitals, checking on her progress, getting samples. She’s surprisingly busy.

One of the things that surprised me is that she started having delirious dreams. Not really because of any of the medicines, but she was too weak to get out of her room and see other things. Her mind, craving some kind of stimulus, started to manufacture crazy dreams for her. After that, she made it more of a point to get out, or to at least watch some tv.

She’s weak. When she’s on the IV, she has to manage that machine, and it’s a pain in the butt, but even if she were off the IV, she moves slowly. She just didn’t have the energy to do anything.

There are the appetite problems. I expected that, but I didn’t expect why. Her taste buds are hyper sensitive, so strong flavors are hard for her. And because all of the new cells in her body are being destroyed by the poison, her body is reacting to protect the damaged tissue by producing a lot of mucus.

Our last cycle, probably one of the biggest curveballs was the spinal tap. She had very bad headaches from that, which also made her nauseous, and hard for her to eat. Sounds like we’re facing that for the next cycle as well, unfortunately.

But out of the last 3 weeks, she really only had a handful where she felt terrible. Most days, she felt pretty strong. It took time for the poison to impact her, so even though she was being treated, she felt good. It wasn’t until a couple of days later that she began to feel the impact of the drugs.

So the whole thing has been a lot more mundane than I expected. She’s bored, but she barely has time to be bored. She’s been sick, but not that much.

It’s exactly like I expected, except it’s not.

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