Diagnosis: sleepy

I went to my naturopath in Portland on Monday. Showed him the report from my sleep study and discussed all my continuing symptoms, and he made the conclusion O and I had already arrived at, but he put it so much more succinctly: I was sleepy.

I was sleepy, and not dreaming. So when I was talking garbage in the middle of the night it was because my regular dream cycle was not happening. And the dream cycle is where you empty your mental garbage can. I had not emptied my garbage can for months… Maybe more than a year. So all this garbage was overflowing and had to go somewhere: it comes out as sleeptalking in my all-too-light sleep cycle.

For five days now I have been on melatonin before bedtime. Still on klonopin and seroquel, so now I am on THREE sedatives. I sure am sleeping now. 11 hours a night. I guess this is what my body really needs right now.

It was my birthday on Tuesday. We all went out for a nice dinner. O had already given me presents in NYC because they were too fragile to make the trip to and from. I had a good time, but in my head my cancerversary has become a more important milestone for me right now. Maybe this will fade after I hit two years, maybe it will take five, but for now the end of February is where I am looking towards.

One of the things I was going to talk to my naturopath about was the transition from being a patient to not being a patient. I hate the “survivor” word. But regardless, my residual side effect symptoms have not gone away, nor has my energy come back in full, but I don’t know whether to wait for that to happen before I begin acting normal again, or whether to act normal as a way of helping break down the psychological barriers to that return. Of course it is a balance, and of course I am pushing myself too hard, but I thought it might have been useful to talk about. Maybe next time I am back here in April.

Sleep Study Results: I Don’t Sleep Much!

I met with my Otolaryngologist who conducted the sleep study. Results are negative for restless leg syndrome, sleep apnia, sleep talking, and (most importantly) seizures. That said I know I talk in my sleep; maybe it was the lack of my dear nocturnal interlocutor with whom I imagine I am having conversations (and somethimes actually do…)

What *is* interesting is that I had unusually low levels of REM sleep, and correspondingly I woke up more frequently than “normal”. I woke up 5 to 6 times an hour. Waking up has a special meaning in this context: from what he explained this means I go from deeper (bur not necessaryily REM) sleep to a much lighter conscious or semiconscious state, usually for a matter of seconds.

He asked me repeatedly if I fell asleep during the day, as this level of non-REM sleep must result in high levels of fatigue and day sleeping.

He also explained that all three of my current psychoactive drugs (lexapro, klonopin, and seroquel) all inhibit REM sleep. He wants to repeat the study once I have titrated off these meds.

The doctor was quick to emphasize that it was hard to sleep in the lab setting, and this does have a tendency to skew results towards worse sleep.

The takeaway: I’m not sleeping well, and it is probably because of the meds. That said there may be/certainly are long term neurological and hormonal changes from the Interferon that are hopefully temporary.

The goal: continue titrating of these meds. Will restart that when I meet with my Oncololgical Psychiatrist in January.

Morning after Sleep Study

I had to go in for a sleep study. Post Interferon, I have been doing strange things in my sleep. I have been talking a lot, and saying some mean things. I have never been a sleep talker, but since the chemo I am doing it all the time.

I am also kicking in my sleep. I think it might have to do with the fact that I am being chased in all my dreams. I think I might be running away in real life, while I am running in my dreams.

So here are pix:
my hospital hotel room

sleep study: my hospital hotel room

my I/O device, 32 channels, 64 pins

sleep study: the I/O box

me hooked up, they hooked it up to the back of my head, front of my head, nose, voicebox, chestt, shoulders, and my legs (those were fun to rip off…)

sleep study: the electrodes

sleep study: the electrodes

the view out my window in the morning looking north at the Empire State Building. still dark at 6am.

sleep study: waking up still dark

i’m foggy. terrible night sleep. the nurses station was directly behind the wall where my head was. after an hour of tossing and turning i had to ask them to be quiet, and also if i could use my headphones. it was almost the same kind of sleep i get on a red-eye flight. not enough. not comfortable, and disorienting.

was very weird to walk out onto the street at 630, walking down 14th st and all the shops are closed. the street vendors are just setting up. very few ppl on the street. weird.

went to chelsea mkt and got egg sandwich, hot chocolate, and did my morning emails. went really slow, but still got to studio at 730, a new personal record.

gonna crash hard tonight

Infections and Fevers

I have this *nasty* infected bug bite on my ankle: i couldn’t walk on friday, so I had to have an emergency trip to dr to get it looked at & get antibiotics. Spent the weekend in bed. Finally walking by Monday night.

Nobody told me not to do my regular injection, which I delayed from Sunday to Monday. (and I did go to the dermatologist Monday, even though i slept through that appointment and arrived an hour late — at 3:30PM!). Apparently the two drugs *do not* like each other. Or maybe my immune system is just that fucked.

I spent the night with a blistering fever, yet shaking with cold tremors. O said she almost threw me in the shower I was so hot (and kept asking for more blankets.) It was the kind of shaking tremor that you just can’t control. It sucked. I couldn’t sleep. Was up for good at 530, but couldn’t really move. Just sitting on the couch trying to meditate some of it away. then at 10am, I fell asleep, and slept all day. today I got up, and felt a good deal better, but still not great. And it has taken me 48 hrs to write this, b/c i keep getting nauseous looking at the screen.

On top of all of that, I left my syringe out – it has to stay refrigerated. I only noticed it late the next day. Two injections worth down the drain, er… sharps container. That’s about $1500 worth of drugs. Good think my co-pay is only $25 for a four pack… It is the only time my insurance has really stood out. That and major surgeries. Everything else they screw me on.


The other good thing is that because I had to do one week of half dose after I got sick (a good six or eight months ago), I have enough extra that I will be able to do all of my injections. I won’t run out.

Slept all day from an asskicking

I had a really bad ass kicking last night. fever and chills, and shaking, and everything. I haven’t had it that bad since the last time I had to pause my treatment… 6 or 7 months ago. O held me tight, but I still felt like I was freezing. and shaking. Slept in, got up, went back to sleep, got up, and went back to sleep. finally came to around 430, disoriented and sore. feel like i got run over by a train. spent.

back in my own bed

I just woke up from a good night’s sleep. I’m still achy and sick to my stomach. But I slept in my own bed. And the bed felt huge, even with O next to me.

The last two nights we spent upstate producing and installing her solo show. The college has some old house that functions as a visiting scholars and faculty ‘guest house.’ I have stayed in these kinds of houses at small New England colleges before. Usually they are spartan, but comfortable. Not this time.

Where to begin…

The bed. The bed was a single bed, that sagged way down in the middle. Single. As in: not twin. We could not lie on our backs at the same time, or our shoulders would push one of us out of the bed.

Sleeping on the couch. Where I moved both nights. But without any blanket or sheet. And the couch was just too short to actually stretch out on. Why do they make big couches that are too small for people to sleep on.

The sheets. The bottom sheet inexplicably only covered 75% of the bed. So our lower legs and feet were resting against the old mattress. This was probably the weirdest part.

The noise. The college rents(?) the back part of the house to a family. A very loud family, with a fighting husband and wife, and a crying kid. At first we thought it was the house next door, but then realized it was coming from behind the house through the paper thin walls. We left the city, went ot the country, and it was much louder than my apartment.

The smell. This one took a while to place. The whole house smelled almost exactly like my Interferon. When I inject, I use alcohol wipes, and so the smell could have been that. But there is a distinct smell from the whole injection process. And the house smelled like it.

The food poisoning. This one’s not the house’s fault. I ate something that didn’t sit well. I woke up in the middle of the night with intense stomach/intestinal pain. Was burping up, but couldn’t puke. Spent long enough on the crapper that I might have fallen asleep (unclear). All I got were a little pile of raisinettes. I wiped my ass, and the tissue was covered in blood. I had been really upset by the intense pain (worried it was an appendix, or something) but seeing a handful of bloody toilet paper set me over the edge. 2am, and I was hysterical. Somehow (drugs, O, exhaustion) I fell asleep. I slept until 130 the next afternoon. Felt sick all day.

Add to that a bunch of bloody noses.

I am just now eating some oatmeal. The first really hearty meal I have taken with a real hunger.

A Tarot Reading: “No”

tarot - the ace of no

Addwag writes:

In honor of your last few post I did a tarot reading for you and I thought the card I pulled for you might be helpful for you to see.

I really don’t know what to say to you sometimes, because you are so much like me- I feel like I am giving myself advice which, lets be honest, I never listen to – esp. when it comes from myself.. I am too busy trying not to fall behind whatever self imposed deadlines I made for myself.

hope you’re feeling a bit more rested (but that doesn’t mean you should get out of bed)

mantra: no no no..


Crappy Day

Couldn’t sleep last night. Blood taste in my mouth again.  I haven’t even put real clothes on today.  Couldn’t make it into the studio. I’ve felt sick, and overwhelmed by the drug side effects.  Lots of dysesthesia, especially in my hands when typing.  Eating is hard – everything is unappealing.  But not eating makes the nausea worse.

I guess the only good thing is that I know it comes in waves, and that tomorow I will feel better.  I don’t seem to bottom out like this for more than 48 hrs.

Atarax Update: New Side Effects

Nothing is easy, and there is no free lunch with this stuff.

The Atarax (which I am taking at a lower dose, with greater frequency), *is* helping with the Dysesthesia attacks. Before I would get at least one attack that was at least a level 7 or 8 on a scale of 1 to 10, and several attacks in the 2 to 5 range. The drugs have pulled that top threshold down to a once a day level 4 or maybe level 5 attack, with several attacks that are in the 1-3 range. These smaller attacks I can manage with breathing, self-hypnosis, and temperature (ice and just walking outside.)

So… the side effects. I’m irritable, I’m having nightmares, and I have completely lost my libido. Like “whoosh” gone. It took me a sec to realize that is what had happened. But yes, that is what had happened. You win some, you loose some.

I told my therapist about it, and she said that she was frankly amazed that I managed to continue to have sex through this whole thing at all. Her comment was that between the hormonal shifts, and the physical falling apart, someone not as strong or vital or depression resistant would not have even made it this far.