Day 66: Insomnia Blog

I'm writing this blog at 4 in the morning because I have been up since 11. It's actually more accurate to say that I've been up since about Wednesday. Chemo sucks, but I have to say that the worst effect for me so far is this extreme insomnia. I have decided to forgo the steroid I'm supposed to take for the next two days to see if that helps, but I doubt if that's it. I was on a much more extreme steroid for the rash I had, and while it caused some insomnia I still slept, even with crazy dreams.

This is just ridiculous.

I mean, this is chemo. On the one hand, I'm exhausted. I was waiting for that extreme fatigue to hit and I was afraid of it. Now I would almost welcome it, which I know is stupid, because chemo fatigue is not actually relieved by sleep or rest. Every day I hit the wall sometime in the late afternoon and my body just needs to lie down. This is a bad time to feel that way when you have little kids who are coming home from daycare and getting ready for bed. I did manage to feed Augie his bottle on Thursday night and read Lenny stories before bed. Otherwise, I can't say I've done much with the kids.

I started to feel bad the night of chemo. Everyone told me the first day would be fine and I wouldn't feel a thing, and that days 3-4 would be the worst. I felt ok going home on the train, but then I was extremely nauseous, my toes were tingling, my head was killing me. They give you 5 anti-nausea drugs pre-chemo with this AC, so the nausea was a surprise. I came home with a slew of medications, and I tried to take the anti-anxiety/anti-nausea medication in order to sleep. It is supposed to totally knock you on your ass. Well, it didn't work. It made my eyes heavy and I felt groggy, but I didn't actually sleep.

Thursday I still felt very woozy, and I ate like I had the flu. I think my mistake on Wednesday was eating a normal dinner, even though that's what they told me to do. So Thursday it was a little bit of scrambled eggs, some toast, some cantaloupe with cottage cheese for protein. Yesterday I could eat a little more, but not much. At least I still have my sense of taste for now. In fact, my sense of smell is on fire. I can't stand the smell of a lot of foods, especially hot foods. It's a good thing I'm not supposed to change poopy diapers anyway, because I know I would hurl just to be around them. I actually stopped my skinny daughter from eating sausage for breakfast yesterday because I couldn't stand even the thought of the smell.

I never had that with pregnancy, with one exception. When I was pregnant with Lenny I couldn't stand the smell of ripe bananas. As in, I would need for them to immediately be removed from my presence. And I love bananas, and making banana bread with ripe bananas. Weird. I also have never had heartburn, not even when pregnant. Now everything I put in my mouth, including all the water I am supposed to drink, feels like it's going to come right back up with this horrible reflux.

And I just feel foggy. Forget chemobrain, it's too early for that. People need to sleep to function. I can get by on very little sleep, but we're talking days here. I am really concerned that I won't be able to work. I am thinking about asking for sleeping pills. I've never wanted to take those--they scare me. Even though I don't have an addictive personality, I'm afraid I would get addicted to ambien or have some of those weird side effects like sleep-driving or something. I'm not worried about the kids. Augie is sleeping through the night now, and Gabe can handle them if I'm knocked out. I just hate the idea of more drugs in my body.

If not for this extreme insomnia I would say that so far chemo is doable. I don't feel good, and I felt miserable for a few days. I feel sick all the time, but it's not as bad as it could be. Gabe gave me the Neulasta shot on Thursday for my white blood cell count--it seemed easier for him to give me the shot in my butt than to give it to myself in the stomach--and I've had arthritis in my hips ever since. I am not supposed to feel any bone pain from that drug for 5-7 days after it was given, but with my existing arthritis I'm not surprised. So I'm achy, and woozy, and my head hurts and this heartburn really sucks, and after eating anything at all I want to lie down, but that makes me feel worse. But most of all, I am about to lose my mind if I can't get some sleep.

The chemo experience itself was ok, once I got in. We were waiting a long time for a room to open up for some reason. I finally met the nurse I've talked to on the phone and emailed with a lot, and she was great. She explained everything to me, showed me how to do the shot, went over potential side effects. In fact when I called her on Thursday she kind of laughed at me and said that after I was done with cancer, I should never take medication again. I appreciated that-she actually believed me about my symptoms, which were rare right away. A lot of times I think doctors don't believe me, or think I'm a hypochondriac, when I explain how chemically sensitive I am and why I dread taking medication. But this is the woman who is allergic to most antibiotics, who throws up after general anesthesia, who spent a week in the hospital due to a toxic reaction to anti-convulsants, who can't take any decent painkillers and even gets a racing heart from Tylenol. So I was glad she agreed with me, and she gave me permission to halve my steroid. Unless I feel really nauseous today, I'm not even asking permission to not take it.

Anyway, back to chemo. Once we were ready to go she did a great job placing the IV in my hand. She told me there was no reason I shouldn't be able to get through chemo without a port. Thank God. I just didn't want another operation, another alien object in me, and I will admit, another scar on my chest. The left side is scarred enough, who needs that on the right? So I got the pre-chemo meds in the IV, in addition to my Emend pill ($600 for six pills of this anti-nausea drug. You would die laughing if you saw these medical bills. First surgery? $30k. Twice what it cost to have a baby and stay in the hospital for two days.) Then she "pushed" the Koolaid red adriamycin (sp?) into me--two huge vials of it, but that only took about five minutes. Then the cytoxan dripped into me for 45 minutes. This chemo is much shorter, and we would have been out of there much sooner if it hadn't been for all the pre-chemo talking and explaining that needed to happen. The taxol, on the other hand, will be 3.5 hours. Ugh. The thing is, the IV in the hand does hurt. So for 90 minutes it's fine, but 3.5 hours! Still, much better than the port.

I've tried to be as normal as possible, but it's hard. I've taken walks every day, not as long as I normally would, and not by myself, but I've done it. Yesterday I tried not to sit or lay down for most of the day, to see if moving around, just putzing around the house, would help with sleep. I definitely felt exhausted after my afternoon walk, but not enough to actually fall asleep. I think I slept for about 90 minutes last night.

And now I'm feeling woozy again. I'm sipping some water and eating some crackers, but it's not helping. Today is our all-day block party, which is usually a lot of fun. We've hired a teenage babysitter, since Augie is just walking, will need to nap, etc., and Lenny will want to be outside all day. I know I am going to be mostly useless, so this way the girl can watch one of the kids and Gabe can be with the other one. I'll make a few appearances, but it will sure be different than last year when I sat around nursing my 5 week old in public the whole day. By that time I had already lost 25 or more pounds of baby weight and I felt great and had this cute little guy attached to my boob all day. This year, he's walking, and I should be able to be out there watching him stick out his big belly for balance while he tears through the street. And he does, he tears. He didn't even pull up until he was 11 months old and now he just wants to run, so he falls a lot. But I know I will be inside a lot of the day, trying to figure out how to be comfortable. And if I don't feel better by Monday, or at least more human, work will be a challenge.

I want to work. I would like the distraction, to some extent. On the other hand I'm pretty damn distracted with a 1 year old and a 4 year old. So we'll see. It's just that October 13 seems so very far away. That's my last chemo session. I know the effects of chemo won't end then, but right now I'm just thinking about 3 entire months without sleep, and I'm remembering that Insomnia movie set in Alaska, and I can see how you would go crazy. I also know that I am in the easy part now, because the longer-term effects of chemo haven't had a chance to happen yet. After three days, you aren't going to have menopause or chemobrain. Feeling like this with hot flashes too? Ugh.

And there's another chemo side effect that hasn't happened yet. I still have my hair. Only until Thursday, when I get it shaved off a full week before it's supposed to fall out. So then I will look repulsive in addition to everything else. I really think I will be down that day, and maybe I will post a bald picture of myself, so you all will need to tell me I don't look so bad, even if it's not true. Right now, outside of my "chemo glow" (red face), I look pretty normal. I can see how women gain weight on chemo though. This nausea actually makes you want to munch all the time. I told the nurse I really didn't want to gain weight, not only because I worked hard to lose it, but because I'm paranoid about not finding cancer if I do. She understood and said they would keep an eye on me. I'm pretty sure if I had said that to the oncologist he would have told me that was the least of my problems. So I like this nurse, but she can't make chemo easier. This is the really lonely part, where you just have to go through this yourself. What else to do?

Clearly this blog isn't very insightful, and I can see now how people say that once you are in treatment, things change drastically. Some things are better. Between May 4 and June 25 I really was living with emotional torture that is hard to describe to someone who hasn't been there. Finding out about cancer, wondering if I would die, not knowing my stage or prognosis, waiting for the BRCA, waking up in surgery, thinking I was done with surgery, needing to do it again, not knowing if I would need to do a mastectomy until two days after my second surgery, putting off chemo. There was so much to think about and anticipate.

Now my mindframe is different. It's not about what the future holds, how will Katy be in the end. Maybe I'll feel like that again. Right now though, it's, can I make it down the stairs to write this blog? Should I eat breakfast or just a cracker? Will my heart ever stop racing enough for me to sleep? Can my kids possibly talk quieter because if not my head is going to explode? And what will I do in the 7-12 days post-chemo when my white blood cells are down and I'm at high risk of infection?

And then, why am I doing this to myself again? Wednesday at 2 pm I was totally healthy. No cancer in my body that anyone knows about, walked from the Fed to Northwestern on a very hot and humid day with no problem, speeding past everyone, making all the lights. That was the hardest part of the first round for me. I was so nervous, so anxious. Waiting for the room was making me crazy. The room itself was nice, I suppose. It was private, I had my own bed and tv, and I did listen to one of the mixes I've received--4 people sent them to me so thanks! But I just dreaded when that IV went in and I voluntarily gave up my health. I know I don't want to be in that 15%. But to poison yourself in this way for a stage one cancer that never made you feel sick is really difficult. Other cancers, I can see it more, because you get sick. Brain cancer gives you terrible headaches, maybe seizures. Bone cancer gives you pain, lung cancer makes it hard to breathe, liver or pancreatic cancer make you very sick (well, they usually kills you as well) as do colon cancers. I can see chemo in those cases--hey, this is making me better. If you are stage 3 or 4, hell if you are stage 2 with cancer in the nodes, it makes sense. But I'm stage one, had no pain or sickness from breast cancer, no health issues at all. I had a baby happily chomping away at my cancerous breast for his entire life. And now, soon enough, I'll be that bald cancer girl for a while, and it seems like that's coming out of nowhere. I do still want to be out in the world and see people, but right now it's hard to even think clearly, so I'm proud of myself for writing this blog, especially because a new chemo effect of blurry vision seems to have just come on the scene. As someone once said, to sleep, perchance to dream! Oh how I wish.