Tag: comfort

Four Weeks Out: I’ve been too well to want to write

I’ve been feeling so well that I have been throwing myself into feeling well. I keep realizing I need to write a status update, but I just would rather ride my bicycle, or have sex, or make a good meal, or email a friend I haven’t seen in a while to meet up, or… All of this is good. Really good.

I’m exactly four weeks out from my last injection. To put that in drug terms, during this time I have taken Atarax less than 5 times, for a while I took less and less Klopin, I only took Tylenol when I had headaches I realized were actually Klonopin withdrawal symptoms, and thus started them back up. I’m meeting with my Oncological Psychologist today to discuss phasing out strategies for my remaining three drugs (lexapro, klonopin, and seroquel). we’ll see what he recommends. Obvs has to be done carefully.

Okay, emotional terms: I’m happier than I have been in 18 months. I feel like myself again, except better. The process of facing down my own death made me less afraid of death, failure, admitting mistakes, honesty, etc, and more willing to ask for help, be honest about emotions and needs, and better at saying no to people (as I always say yes, and always end up over extended.) I’m happy, full of energy, and a lot less of a pain in the ass.

Okay, my energy levels: I have only had two proper dysesthesia attacks, and a few tremors that I have been able to control through meditation and breathing. I get up in the morning, and can go through a whole day. All this, despite the mid August NYC heat. I’ve been riding since my return 6 days ago. Rode three of the last four nights. 2, 4, 2 laps around the 3.3m park. Feels really good. I’m hitting lactic threshold in my legs, and i’m pushing aerobic capacity, especially when i did 4 laps. it feels good to be able to feel where my body is. where i can go. and then week by week, expand that. i’m good at rehabbing, actually. i’ve done it a *lot* of times. too many times. a lot more than I should have…

It is fun to restart things in the studio. I have spent this week taking a big picture look at everything we were working on, and figuring out what needs to happen next. A lot of strategy. Big picture thinking I could *not* have done a month ago. Turns out I’m working on 101 distinct projects. Oops. About 20 of them are more than 90% done, and just need finishing touches, and at least 30 are just brainstorms i sketched out on paper and a lot of them can be straight up killed b/c the other ones are so much more worthy. But still. Way too many.

I’m riding the subway. I’m actually typing this on the subway right now. PDX got the heat wave, and NYC had a luke warm rainy summer until this week that I returned. Everyone keeps saying this is the hottest week all summer. It is supposed to chill off in a week. But it feels good to realize I can take the worst of the NYC summer, and I’m okay. I’m still wearing my ice vest for commuting, but I don’t need it anywhere near as much as I did a month ago.

My hunger is back. I’m eating more. I’m eating faster. I’m eating everything. I have had all the things I was unable or prohibited from eating: shellfish, orange juice, lemonade, mustard, rare steak. Strangely, I have not had any sushi yet, and though I had some Indian food, it kind of kicked my ass from the spice.

I have glasses now, my hair has thinned and has no curl anymore. I had to cut it really short to get rid of all the chemo hair that was brittle and frizzy. I can’t wait for my fingernails to start growing back. I can brush my teeth again, and finally shaved with a razor today, for the first time in maybe 9 or 10 months; my skin just couldn’t handle it.

All in all everything is going so much better. I’m looking forward to going back to teaching. My department chair has been really good about working out a schedule that eases me back in. I start with some advising and internships, and going to faculty meetings, and pick up the second half of two “team taught” classes mid semester. I am confident I will be able to do that, and looking forward to being back in the classroom. It has been 18 months, and will be another two more.

Unless anything drastic happens (good or bad) I will prob be writing less and less, which is a good thing.

Back from the road

36 weeks done. I have 16 weeks left. 70% done. My mom is coming tmrw, which will distract me for a week. I’ll be down to 15, the last 3 or 4 of which will be in Portland. In my rationalization and fantasy, that makes it only 12 weeks left of solo, non-distracted injection. Of course this is a fantasy: I’m still months away, but it feels closer. I think that after week 39 (75%) I will feel a solid “last lap” feeling.

I was on the road for the last week, giving lectures with my studio mates. I did a lot better than the last time I attempted this in November. That said, this will be the last time I fly before I go home to Portland in July to finish my treatment. I did really well, but it was hard enough.

Some things have changed over the last few weeks that I have neglected to report. Most importantly, I’ve gone off the Atarax, which was controlling my dysesthesia, but also making me stoned, irritable, and sans-libido. I was in at my dermatologists, and he said “well, if you really think it is the Atarax, why not stop for a few days; you should feel the effects immediately — its not something that builds up in your blood stream. If the dysesthesia is too strong, you go back on it.”

Amazingly, I was fine. The three months on the Atarax had got me adjusted to knowing when and where i was most likely to experience an attack, and to avoid those situations, and controlling the reaction through meditation when it was unavoidable. So I have had to concentrate harder at times, but I have been rewarded with a better mood, a lot more energy, and a libido that is still suppressed (from the IFN) but a lot stronger than before.

I had several doctors appointments about 4 weeks ago. My CT scans are clean. My Oncologist continues to tell me I am doing better than most any of his patients. It is small relief, considering this experience feels so bad, but I wonder about those patients who are doing ‘worse’ than most of his patients.

The day I was in I had to wait 4.5 hours to see the doctor. I’ve gotten really good at being patient in doctors offices. I was told the doctor was running late when I signed in, and after about 45 minutes I checked in to see whether we were talking a few more minutes, or a few more hours. Mostly I wanted to know whether to pull out the laptop and start working. I was told that it was most definitely a laptop day.

The way the nurse phrased it was “There are some very sick patients here today.” She said it under her breath, so as to not let it spread too far beyond our little micro-conversation-sphere. I found out that one patient had to be admitted before I arrived at 10am, and several other patients were admitted during the 4.5 hours I was waiting. Apparently the doctor was away at a conference, and these older patients didn’t go to the ER when they should have, as their skin grafts became infected, or they got really sick with a pneumonia, or what have you.

Knowing that there are patients in the office who are likely dying gave me an incredible patience with waiting. I could have sat there for the whole day, patient and content, meditating on the wellbeing of those admitted patients, and grateful that I am strong enough to wait with patience.

One of the interesting things the doctor told me is that along with the reduction in physical changes that comes with month 10 (i’m still in the physical changes zone, but last month was much worse) comes an increase in anxiety and psychological effects. So months 6-9 are the hardest physically (all kinds of body falling apart.) But months 10-12 feature an crescendo of anxiety that doesn’t get better until after the last injection, and then, two or three days later, it disappears. Invariably, the anxiety vanishes within a week of the last injection.

I doubt that all the physical symptoms will go away quite so fast (my fingernails continue to disintegrate, i have Reiter’s lesions all over my legs) but it is nice to know that a good part of the mental stuff will go away fairly quickly.

Facemask as tactical device

I just flew to and from Los Angeles for a conference. As per my doctor’s orders I wore a facemask and used my neti pot upon landing. I didn’t get sick, which was wonderful.

In the process I discovered that my facemask was a great tactical device in the struggle for space on the airplane. The first flight was empty. I had a window seat, and there was someone sitting in the aisle. I put my mask on, looked out the window for a minute or so, and when I looked back, the guy sitting in the aisle seat was gone. Disappeared. Went and sat at some other aisle seat. So I got a whole row, and slept well. The thing that he didn’t get is that I wasn’t sick. I was not contagious. I wasn’t wearing the mask to protect him, I was wearing it to protect me. I was afraid of *his* germs!

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.

i got a hair cut too

feenix

This is Feenix getting a haircut. One of my parents two dogs.

i got haircut too

my hair kept falling out.  and getting thinner and thinner.  and loosing body.

six months ago i started out with about two inches of pony tail that was a bit over 1 inch thick.  before this hair cut (six months later) i had about 2.5 inches of pony tail that started out at 1/2 inch, in withered to strands by the end.  normally, after 6 months, i would have a big bushy bunny tail back there, with four inches curling back on itself in a pom-pom bun.

today marisa noticed that i have half as much armpit hair as i did before.  or maybe less.  we couldn’t decide whether my chest or other body hair had dropped too.  i did notice a funny hairless patch on my belly, right near one of my early favorite sites of injection, which i have since had to abandon because it turned red (and still is red), and got scaly for a while.

Freezing out the pain

im sitting in the server room at the studio, where it is perpetually 64 degrees, or cooler.  there is an industrial AC unit that runs 24/7.  even in the winter.

i kinda figured out how to deal w/ the hot flashes and pins and needles when i wait for the subway.   it seems to happen every time i go into the subway, about 45 to 90 seconds after i walk onto the subway platform.  so i decided today to just hang out at the top of the stairs until the train was passing.  then i shuffled down the stairs into the subway.  no pins and needles on the subway platform.

BUT

the pins and needles hit with a fucking vengence at the very end of the bus ride over to the west side highway.  i unbuttoned my shirt, and was scratching at at my stomach, and arms and legs like crazy.  it seems they have turned off the AC on the buses, or mbe just this one.  my body just flat out freaked on me.

i got to the studio, and couldn’t get the AC working.  went up to the kitchen looking for some ice; just the other day, the freezer was full of ice, but today it was empty save one sketchy looking 3 x 4 inch ice pack.  i rubbed it all over my arms and belly, only to discover it had frozen soda on it, or something.  so then i washed in the sink.  what a sticky mess.

it was weird storming around the lab trying to make the AC work, trying not to cry, trying to figure out how to get some food (i called for takeout, but no one was picking up their phone) and everyone was either on the phone or had their earphones on.  i wanted help, but i was embarrassed to ask for help b/c i didn’t want to have explain or something, and everyone was in “ignoring mode.”  it is my responsibility to ask, but sometimes you just want someone to notice you, and ask if you need help.  old-lady-on-the-bus syndrome.

so here i am in the server room.  my assistant is out standing in line at the sandwich shop getting food.

EL called right when i sat down in the server room, and i was breaking down and crying.  and he gave me a good talking to about how i can’t let myself freak out over external pressures.  my health is more important than anything anyone could ask of me to do.  No deadline is as important as my health.  Gosh… deadline == dead line.  um.  that’s morbid wordplay.  but maybe it will help me focus on not letting the deadlines takeover.

Its really hard.  I’ve started so many things that are in motion that are controlling my time.  I mean this book i’m working on, I started it over a year ago.  there are a bunch of things like that, which I can’t get out of, are already set in motion, and involved at least one other collaborator, if not a team of people.  and there are things like a printer deadline and the fact that the book is already up on amazon.  seeing the book on amazon really freaked me out.  that made the deadline real in this whole other way.

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.

Saying “I Love You”

Since the diagnosis i feel like i have an increased capacity to love people, and for people to love me.  or, put another way, i’m more likely to tell people i love them, and they to tell me.  people whom i very close to (but never said it), but also people whom this ordeal brought me closer to.

I don’t think it is the fear that i might not get the chance to say it b/c i might die, but rather that the possibility that i may die spurs me to do things I really wanted to do anyway.  its not that the diagnosis has me backed into a corner, but rather that it has become an opportunity to take advantage of.

I guess I became much more comfortable with the idea of loving platonically in the last few years.  I’m not sure when it happened, but it did.  I became much more comfortable with saying it, even to my parents.  I mean, of course, I love my parents, but I think that in the last few years something changed about the way I related to the phrase that allowed me to really mean it.  Or to recognize that emotion as love, though a different kind of love than romantic love.

So I got more used to saying it, and the idea of it.

Correspondingly, my cancer caused my friends to tell me they loved me.  I could speculate on causes: that it was the fear that I might die and they might never be able to tell me, or that the *realness* of the cancer allowed them to break out of their fear, or soomething else equally speculative.  But I will simply say that it has happened, and it is comforting.

Feeling better this morning

i hope i’m not speaking too soon, but this morning i just feel like i am a little bit hungover.  like three glasses of wine hungover.  i slept through the night.  i shot up around 1am.  its 11am now.  i slept 9 hours.  if i had chills and fever i was able to sleep through them.

It was relatively cold outside (74 or so) so S proposed not using the AC last night, and just having lots of fans.  So it was in the high 70’s.  Maybe that helped.

Tired, achy, and sick feeling, but this round was a whole order of magnitude better than the first round.