Tuesday, July 13, 2010

Day 69 Redux

Thanks to everyone who is trying to help me through this awful morbid insomnia. I appreciate all of the concern, and I wish that each of you could give me one hour of your sleep--that would be awesome! I was really losing it today. I still feel like a subhuman, but I thought it would be good to update and get out some of my frustration with the medical community. It comes down to this.

No one knows what the hell to do with me.

It's like they think I'm kidding, or lying, about how chemically sensitive I am. When I was dreading chemo in this blog and people would tell me, it might not be that bad, I wasn't trying to be negative. The idea that I will have bizarre side effects is simply the truth for me. This is a big reason why I don't drink, why I've never done drugs, not even smoked pot. I discovered in college that I couldn't take Nyquil because it kept me awake--I had to take Dayquil. Valerian makes me jumpy, I can't sleep after drinking wine. I hallucinate on pain pills, my blood pressure rises from tylenol. They used to tell me I was a trooper as a kid because of the pain I could endure unmedicated. I think even then, I was more afraid of the effects of the drugs than their purported benefit. I still remember crawling into my parents' room when I was 8, unable to walk because of my abdominal pain. Appendicitis, you ask? Nope. Toxic reaction to Depakaine. ER doctor called it, but my neurologist kept me in the hospital a week doing guinea pig tests on me because he didn't believe it. The more meds he gave, the worse my pain was and the more seizures I would have. The meds stopped, I got better. I was "cured." Uh-huh.

It's like I live in opposite land for medicine. Maybe the good metabolism that helps me stay thin also is very efficient at metabolizing medication. Who knows.

No one was calling me back for the longest time today. I called everyone--oncologist, my ob, gp, random nurses, you name it. When I thought I was going to keel over I took a lorazepam--one of the anti-anxiety drugs I was prescribed that I've taken only a few times, and not since last Saturday. This is the drug that knocked me out so much after my first surgery that I fell asleep sitting up eating a cracker. Post-chemo, all it does is make my heart race. I started researching side effects online and realized I NEVER should have taken that drug. People can go through withdrawal after just one dose. Of course this is rare. Of course, that means that probably happened to me, and it might be one reason for my racing heart.

Ambien just made that heart race more. I have tried every kind of relaxation technique, exercise, different foods, bedandryl, herbal tea, you name it. Again, this is not sleeping erratically or getting only a few hours. I would take that. This is NOTHING. I can't tell the difference between day and night. I forgot to shower for two days because I thought it was the same day. And yet somehow I have been working, albeit from home. Anyway, the oncologist's nurse was going to prescribe some other sleeping medicine, and I got totally turned off after looking at the side effect possibilities. Then someone else called me with the following advice: Take no medication at all. Try to meditate. Try acupuncture. Relax.

Oh, ok, I'll go do that! I forgot that I could just relax! Thanks.

So tomorrow I will try acupuncture, but not to help me sleep. It's free, it's something that can appease the docs, and maybe it will help with some other side effects that are physical rather than neurological. I'd be willing to walk on hot coals for sleep, though that's as likely to work as medication or meditation.

These people just don't get it. I have insomnia for one of two reasons: chemo, or the drugs they gave me to counteract the effects of chemo. Perhaps both. These people were trying to talk to me about anxiety, about how we don't realize how stress affects our bodies. Please. I have had breast cancer for two and a half months. I haven't been in denial for one minute. Death? I faced it, I still face it, and everything that goes with it. Loss of fertility, youth, my hair, you all have seen that here. I have dealt with it.

I know what it's like to have anxiety-related insomnia, where you don't sleep well or wake up terrified or can't get back to sleep. That sums up the month of May for me. But I have gone through a lot of bullshit that didn't even bring me down the way it should have--the second surgery, the fact that I had a massive annoying reaction to that surgery, taking steroids for that (21 pills in six days, nightmares, jumpy--STILL COULD SLEEP. compare to 4 total steroid pills post-chemo. I don't think it's the steroids, at least not alone). And none of that kept me awake for a week. That happened the moment I started chemo. Even Gabe admits that while I was miserable in some ways, I was emotionally calm the few days after chemo. It wasn't until the last few days of sleeplessness that I lost all sense of reason.

So I am pretty furious at this idea that I need to talk to a social worker. To do what, talk about breast cancer and how it sucks? At this point, I am having fond memories of breast cancer. Oh, when I only had cancer, and I was still fully functional. Yes it could have killed me, but not as quickly as this chemo might if I end up in the hospital with no immunity (let's hope for no blood transfusion--of course I have the rarest blood type). Breast cancer is not the issue right now. Maybe it will be in six months, but I need to get there first. Chemo is the issue--not my "feelings" about it, but my admittedly "morbid" physical reactions to it.

I don't need to do yoga or talk about my emotions. That might help down the road, or in general with cancer, but right now what I need is to sleep. Any talking I would do would resolve around sleep, not cancer. Once I sleep, then maybe I will see the sun shine again. I am well aware that the lack of sleep is destroying my mood, my sanity, and my perspective. But that is what is happening--it's not the other way around.

There is a reason that sleep deprivation is used as a torture technique. It's one of the reasons Winston gave up Julia. It turns you into a primal being, and it messes with everything in your body. I have started starving at 2 in the morning because my body thinks it's mealtime. When I close my eyes I can feel them moving, like scared skittish animals under my eyelids. I am so tired I don't think when I'm resting. They keep telling me to turn my mind off. No problem! It hasn't been on in days!

After taking the lorazipam today I rested for a while. No sleep, heart seemed to be worse. And then I got up to go to the bathroom. And I fell over. That's when I started researching the side effects. Give it a try--I feel like these drug companies are insane to make some of these things.

My seizure history puts the docs at a loss too. They were telling me they've never seen someone have a chemo-induced seizure. First of all, I'm not worried about that. I'm worried about a sleep-deprivation seizure. If you had a clue about neurology you would know that is a big possibility. Second, there are a lot of things that have happened to me that they have never seen. Never seen someone not sleep at all for days. Never seen someone have toes tingling the day after AC. 95% of people on this chemo will be constipated, they told me. Guess who is having diarrhea? Sorry if that's TMI, but I'm just saying. You will lose your ovarian function, they told me. Today, I got my period.

Gabe and I called the babysitter again today so I could get some middle eastern food and we could talk. I never realized how hard it is to find something on a middle eastern menu that isn't grilled. Anyway, at dinner he asked, I wonder what they say to men who have breast cancer? I think that's a great point. What do you think they said to Richard Roundtree? Hey Shaft, you have issues with your breast cancer? Well, get over it. Go meditate, do some yoga. Take these 5 drugs that we have never tested fully on men with breast cancer. Impotence? Who cares? You're Shaft, right? Maybe they told him to darken the room, put on some mood music and think happy thoughts (I was literally told that today). Do you think?

I'm doubting it. Imagine telling a room full of men diagnosed with prostrate cancer to talk it out, do some pilates. It's like it's still the 19th century and women are just crazy hysterics. But not this lady. If chemo is poison that kills cancer cells, mouth cells, hormonal cells, hair cells, white blood cells, fingernail cells, intestinal cells, and more, why the hell couldn't it cause your brain to forget how to sleep?

Maybe next time they tell me they don't know what to do with me, they have never seen this before, and I should call a social worker, I will tell them to talk to me like I am Richard Roundtree. I bet you've never seen that shit before either. But you're not going to talk to him like he's lost his mind, right? Or you had better watch out.


  1. Quick update--I slept a few hours last night, maybe 2 or 3. Not well, constantly woke up, but the humanity has started to creep back in.

    I am going to see a neurologist/sleep specialist today. Ironically I was referred by my OB, the one doctor who seems to be able to admit he is not an expert on everything. He said, I don't know what to tell you, and I don't know what the problem is, but it doesn't matter. We'll find a way to fix it. You will sleep.

    I still can't believe that a patient with a history of epilepsy who hasn't slept in a week was referred to an acupuncurist and a social worker. I was told "These are the best things in our arsenal (the drugs that didn't work for me)." Um, it's not your arsenal. You are cancer doctors, not brain doctors. Anyway I will do acupuncture tomorrow and see my GP, then get my head shaved. Fun day!

    Thanks for reading.

  2. Man, I'm glad to hear you're going to see a neurologist. Seems logical to me considering what you've described. You know I'm a proponent of meditation and yoga, (and I know how you hate yoga--so sorry, but that's just cracking me up that they told you that) but I'd be the first to tell you both are an acquired practice that won't show immediate effects. It's more cumulative over a long period of time. Telling you to meditate in the middle of a lack-of-sleep crisis is like telling you to eat blueberries with lots of antioxidants to get rid of cancer. At least with acupuncture you're a passive recipient; you're being practiced on rather than trying to figure out what meditation is. It just shows they don't know what to do for you. They're grasping at straws. But yeah, seems like having a neurologist on speed-dial is a good plan.