Tuesday, July 13, 2010

Day 69

Is that what day it is? Because honestly I have lost track. It's three in the morning. I haven't slept since Saturday, when my body finally got so tired it gave me about 5 hours of sleep after I took some anti-anxiety/anti-nausea medication. This is going to be a depressing blog, in case you don't want to read it.

I wish I had never started chemo.

My worst fears are coming true. This chemo has made me non-functioning in many ways, but not for the reasons I expected--not at all. I was worried about fatigue or menopause or chemobrain, but at this point I would take all of that if I could just trade it for some sleep. I finally got a prescription for some generic ambien yesterday. I worked from home, because I didn't know if I would crash at the office. I took two walks. I ate well. I actually got a lot of work done, which was surprising since I am so tired that I can hardly see and looking at a computer is hard.

I have the lowest dose of ambien, and I was scared of taking it so last night I cut that in half. An hour or so later, I took the other half. I was given permission to take 10 mg, and these pills were 5, so a few hours later I took another one.

To absolutely no effect.

Well, that's not true. They made my heart race and it felt more difficult to breathe. But no sleep. None. I was worried about the side effects and the grogginess. It never occurred to me that the shit just wouldn't work at all. Tomorrow, Wednesday, I enter the "nadir" face of my immunity where I am at highest risk of infection. How can a person fight off infection with no sleep? I was told that sleeping and eating well were the most important things, in addition to lots of water. Water and food I can do, but this lack of sleep is something I can't control, and believe me I've tried everything. Ambien was just the last resort.

I have had trouble sleeping since I was 9 years old. Gabe was telling me the other day that we need to do something about my sleep. Sorry babe but this is different. This is not being unable to fall asleep until 2 am, tossing and turning, waking up easily at any noise, getting up at 4 am and not being able to fall back asleep. This is not my mind racing. Shit, my mind is barely working. This is chemo-induced insomnia, morbid insomnia they call it. And besides infection there is a real concern that it could severely impact my life.

I had a grand mal seizure in school when I was 11 years old. I had been off of medication for epilepsy for a few years and had been fine. Right before the seizure, I had gone to two sleepovers that weekend and hadn't slept much, and it's thought that that was the trigger (in addition to my proclivity for seizures--a regular person could not sleep and not have seizures, obviously). This lack of sleep could very well give me seizures again. That would mean six months without driving and anti-convulsants for the rest of my life, poisoning my liver and my metabolism and doing all sorts of other stuff to my insides. It would mean I would need to think about being able to care for my kids by myself. It would mean that cancer, or rather, treatment for cancer, gave me a condition I managed to banish from my life 17 years ago when I stopped taking medication for good. The thing is, they took me off of that medication at that point because I had "grown out of it." I had childhood epilepsy, it was assumed, and I was well-controlled on medication, so they took me off of it because I had grown up. Well, if it starts again, there's no growing up anymore. I wouldn't be able to stop medication.

It is very hard to function like this. I worry that I will drop my baby if I pick him up because I'm so out of it. I thought about going on an errand yesterday while working from home and decided it would be a bad idea to drive. I think I am going to have to ask permission to work from home for the time being, as I can't see putting myself on a train and in a busy office building with zero immunity.

What's the point of doing this? It might be all for nothing. I feel sub-human at this point, and in a few days I'll look that way too. Stripped down to the bare bones of a person, emotionally, physically. I can't even complain about bad heartburn, extreme dehydration, my mouth hurting, the general feeling of malaise. That just all pales in comparison. I would be tired from chemo anyway, and I have slept five hours in one stretch in the last six nights.

I've done enough chemo with just the one to make myself bald so it's hardly worth stopping--except I want to be able to function. Here's what is getting me now--here's the depressing part. It's like my body is breaking it down for me, telling me how it really is. Katy, you fooled yourself into thinking you were an in-shape, healthy, high-functioning attractive person. Well that is bullshit. You have cancer, and maybe epilepsy, you can't take care of your kids or work, you can barely think, and you sure as hell aren't going to want to look in the mirror in a few days. That's how it really is, and all the rest of it was just a joke.

Maybe with some sleep I would feel more positive. Right now I just feel like a shell of my former self. I feel like everyone else my age is doing normal 34 year old things--having babies, working, thinking about preschool for their kids, planning vacations, fighting with their spouses, working out, having early midlife crises, whatever. I'm just stuck in bare-survival mode, supposedly working on not dying. I feel 100 years old.

I hope this blog doesn't scare everyone off--I'm actually surprisingly good around company. I've had some friends visit over the last few days and that's been great--it fools me for a few hours, so I can feel somewhat normal again. But then night comes, and unfortunately over the last week, it hasn't really ended.


  1. If only singing rockabyes to you worked the way it does with the kids. I would do anything to help you get some sleep; if it meant I had to stay awake for a year straight. Having endured some sleep deprivation myself I can only imagine how your head must now throb, things around you feel otherworldly, and how things just won't seem any better until you can truly rest. Here's to hoping we figure this out before it's too late baby. I've known you at times before when you couldn't sleep because of anxiety and this is definitely nothing like that. You have seemed nothing but calm after the beginning of chemo; except for the increasing (and understandable) franticness (franticity?) which the lack of sleep has induced in you.

  2. You know, your blog is not scary. You seem like you're trying to deal with this the best way you can. I'll bet it's driving you nuts not to be able to pick up Augie, but you're taking good care of him by holding off until you're stronger. And you're taking good care of yourself by not trying to go out too much right now, though I'm sure you're going stir-crazy. I hope you get sleep, soon. Thinking of you and much love as always!

  3. Hi Katy,
    I really hope that you are able to sleep soon and are able to make up for all of the sleep that you've missed. I know a bit of what sleep deprivation can do from personal experience, and oh what havoc it can wreak on someone.
    You are a dynamic and amazing person. There will never be a day that your blog is too depressing to read. It is your reality, a part of you, and we are fortunate to get to be a part of it. Realize that you are taking on the world (full time Mommy, wife and working full time) while dealing with chemo. It's hard enough to do these things well without throwing chemo in the ring, and it's not fair to expect the same of yourself while undergoing chemo. Give yourself a break and permission to do whatever you need.
    And Katy, you will always be beautiful!! I know that you may not feel it, but know it and believe it.
    Take care, Sweety. You are in my thoughts and prayers. Hope to see you soon.