Tag: appetite

the foodz, i has it

my personal chef delivered today. the food is so yummy. i’m actually eating dinner. i’ve been having so much trouble with that.

it has taken me 5 years to figure out new york. what make it hard. what makes it easier. who are your friends. how to deal with all the crazy people in power.

i think that this discovery of delivered home cooked food is one of the more recent revelations. it is actually much less expensive than take out or deli counter food, much healthier, and everything is to my tastes. so none of it is hurting my mouth. its pretty amazing.

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Today I feel like I have cancer

There are days I feel like I don’t have cancer. And other days where I definitely feel like I am under treatment. Emotionally and physically exhausted. Fatigued.

Dana Jennings has a nice post about all the kinds of fatigue that come with treatment. I feel like I’ve been through most of these. And today, has been a heavy one.

But the weariness caused by prostate cancer isn’t a constant. It fluctuates from week to week, day to day, even hour to hour. In this nano-age of super-instant gratification, we have lost sense of organic time. Prostate cancer, though, has planted me more firmly in each moment. One of the things that I’ve learned, as I try to pay attention, is that cancer’s paint box includes many shades of fatigue.

Tongue Nasty (NSFW?)

tongue nasty (NSFW?)

This is dead skin on my tongue. The pink part in the middle is where i scraped off some of it, exposing the flesh below. It is pretty revolting. The most bizarre part is that most of the patches have a ‘breathing hole’ — a hole in the middle that extends through to the new skin below. I hope my molting finishes soon.

I scraped at it a bit, and pulled off a bunch of clearly dead skin. But the next day it was back (and hurt more.)

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.

Too True, Too True

O is sick.  She writes:

I’m not really hungry but i haven’t eaten and want the comfort of
comfort food (sound familiar?) so i’m going to call the diner for
delivery and then just stare at it when it arrives.

it’s a mystery to me what this is. my sore throat is super mild, it’s
just headache, body aches, and total fatigue. i think i might also
have a low-grade fever. i’d say that i really hope you don’t catch
this, except that i know these symptoms already define your every
day….

sad but true.  and well put

Sick in the Mountains

I’m at a conference in Banff, Canada.  I gave my presentation yesterday.  I’m feeling pretty sick today

I had the weirdest rough night.  i think im getting a cold.  My room is really too hot, but I can’t control it because there is only one window and it is 12 inches square.  Really weird design.

I injected last night.  and crashed to sleep.  woke up ~5hrs later totally out of it.  this seems to be a new trend in the injections: waking up 5 hrs later.  I was really out of it.  the wildest part is that i wake up and go to the bathroom and was so out of it i didn’t lift the toilet seat cover! and peed onto the closed toilet!!!

i mean i had a quick reaction time and only splashed a little bit on the seat. and kinda threw a towel on it and the floor. and washed off my legs.  and was back asleep immediately.  but it was really surreal.  to be that out of it.

and then i woke up later with chills. haven’t had them for weeks. i think the altitude is making it worse. supposedly ppl only drink half as much up here at alititude.  so it must affect all drugs?

i slept through my alarm, but i pulled myself out of bed to catch breakfast right befor it closed.  food is in this big cafeteria.  but no one was there.  they had all gone off to their conferencey things.  i sat in the farthest scenic corner and struggled to eat my food.  I’m having trouble with food again.  I have no appetite, and it is not appealing.

but also it is the cafeteria effect. i dont know how much to eat. i have to point of reference: these are not my bowls. i dont know how much cereal i’m putting in. i didn’t prepare the food so i have no idea what size portion i am putting onto my plate.  because my own hunger is unreliable, i’ve been relying on measurement to know how much i need to eat.  i’ve figured out routines.  but here, i have no frame of reference.  probably the best were bean quesadillas. i mean they were shit quesas, but it was plain and filling. and i knew how much i was eating and how much i would want!  there was a standardized quantity.  totally disorienting.

I feel the sleepy undertow again

It is kind of amazing to feel the side effects of the Interferon coming on again.  Whereas before they were confusing, surprising, chaotic and alarming, now they are like the return of an old friend.

This morning I had my first “I don’t feel like eating anything in the whole world” feeling.

This evening I felt the sleepy undertow.  I lied down around 6pm, and felt like I could just go to sleep.  I felt like it was going to be so hard just to get myself up.  I had a friend coming for a walk at 630, so I forced myself to get up.

So all my old friends are back.  Fevers, Loss of Appetite, and Exhaustion.  Side effects make constant companions.

I will fight them, though.  I will fight them with water, food, exercise and meditation.

I sound rediculous, right?  I’m just reminding myself.  I guess I don’t really care what I sound like b/c I know it will work.

Managing the side effects, managing the heat

S and i went to the coop yesterday.  it was EPIC.  an official record: $346.24. it was so hard(core), I almost started crying towards the end.  we got three watermelons! (watermelon is the only thing i can consistently eat everytime.)  i was totally exhausted.  i just sat down in front of the CLIF bars and tried really hard to breathe.  i was actually, kind-of, meditating in the Park Slope Food Co-op. Really.  S sat down next to me.  and we just sat for a minute or so.  while the craziness of the co-op went on around us.

today & yesterday I am doing better.  maybe it was because I didn’t try to work yesterday.  i stayed home and read in bed. (and went to the coop.)  also, it was much cooler today.  the weather has been kicking my ass so bad.  it is the worst that the NY summer can offer.  by the time I made it to the studio I was a wilted flower.

i think i can feel the good effects of coming off the drugs, but its hard to tell because the weather has also been better in the last few days, and i have pushed myself less.

That was complicated, let me try that again: When I got back to NYC the weather was so hot and humid, and my symptoms from the Interferon correspond quite perfectly to how I feel in hot and humid weather, so I was really unsure how much of what I was feeling was drugs and how much was the NYC weather.