Tag: side effects

Life will be better in 11 months

O mentioned that she was imagining what my life was going to be like in 11 months when the drug treatment has become so routine, and then is over.

i think my life is going to feel so awesome and easy in 11 months

like:
i wont have to shoot up
i’ll have lots of energy
i will have made it through
i will have an appetite
i will eat anything i want
i wont have to take anymore anti depressants and anti anxiety drugs (which make it so I can’t orgasm)
i will be able to have all the orgasms i want
i will want to eat more than watermelon, smoothies and watermelon.  oh and frozen pizzas
oh, life will be better in 11 months
I hope.
PS I just addd the “hope” tag

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.

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.

Post Injection: Rough two days

The last 48 hrs have been pretty rough.  I woke up Tuesday feeling like had done a really hard workout, then drank the better part of a 12 pack.  My whole body ached, I had a pounding headache, i was nauseous, and I felt like it was all going to get worse if I moved.  But I moved.  I got up.  I slowly felt a little better.  But the headache never went away (despite some Codeine), and the chills and fevers came back in the evening.  I did manage to sleep last night, but again, woke up feeling like crap.  I felt better mid day.  This evening I’m panicking about the injection I have to give myself.  I’m scared.  I spent an hour on a park bench wearing my ice vest alternately trying to meditate and succeeding in crying.

Spoke Too Soon: really bad night

it seemed like it was going to be an easy round this time, but i spoke too soon. I went through a mild round of chills and fever, felt better, and went to sleep around 11, drugged and seemingly peaceful.

 

I woke at 130am with the worst chills I have had yet.  Much worse than the first night I started the much higher IV dosage. I tried to get warm with the heating pad and relax as best i could, but my muscles were on the threshold of spasming and going into shakes.  Shivering at the top of the stairs, I called S for help.

He turned the AC off, brought luke warm water, warmer sweatpants, a winter down blanket, arranged the heating pad, and held my hand until I/my body had calmed down enough that i was not shaking anymore.

Sometime later I realized I had started sweating. It is amazing how I can’t notice that liminal moment when I transition, I only notice once I am already overheated and feverish.  I pushed all of my warm stuff off and crawled out of bed.  I think S was there by the time i got out into the living room.  AC back on, ice packs on the chest, drinking cold water.

The fever was still going strong when S went to be around 3am.  I tried to get to sleep.  i took even more sleeping drugs.  my mind was racing, and my body was aching.  i tried to meditate.  i tried to do guided visualizations.  i listened to Music for Airports. and still I was sweating, and tossing and turning with no real chance of sleeping.  It reminded me of the second day of IV infusion, when I couldn’t sleep all night. 

As the sun started to come out, sometime before 6am, I thought I might try to sleep on the couch.  sometimes moving into a new bed helps me.  its like i think i’m starting the getting-to-sleep process over, with a clean slate.  i pulled off the cushions, brought out my pillow and sheet, set down my liter jar of water, and went to put away my ice pack.  coming back to the couch i forgot about the water, and kicked it over, spilling a liter of water on the floor and splashing it all over the sheet and cushions.  it was too much.  i just sat down on the wet couch and cried. 

it felt good to cry.  i was really frustrated.  and i couldn’t really express it.  and i haven’t cried in some time.  and the crying was maybe the thing that made me tired enough that no matter what, i was going to be able to sleep.

I finally slept around 7am.  I woke around 1030am. i feel like i got hit by a truck.  or maybe like i did a hard workout, then drank a six pack on an empty stomach.

what i don’t get is why there were two waves of chills/fever, why the second one was worse, and why the self injection seems to have such stronger side effects, at least on the first night.  I guess mainlining any drug is the best way to take it.  Maybe that or snorting it.  LOL.

so, my mind was racing the whole time.  i kept remembering things i needed to do.  and ideas i had had but had forgotten, and questions i had, and thoughts i wanted to remember.  so i wrote them down in the book O gave me.  in the dark.  my handwriting is bad enough when i can see what i am writing.  check out what it looks like when i can’t.  I think i will be able to decipher these runes.  I think so, but it will take an effort.

Insomniac Notes 1

Insomniac Notes 2

 

Self Injection Day 1: I learned how to shoot up!

The calm surrounding restarting the drugs evaporated about two hours before I had to head up there.  I started getting headachey and overheated.  I tried everything to make it go away (eating, drinking, pain killer.) it wouldn’t go away b/c it was psychosomatic.  This was happening a bit in PDX. My Dr there explained to me that it was a very well documented phenomenon that chemo/interferon patients get psychosomatic symptoms *before* they go to actually get the drug.  So chemo patients will start puking in the morning before they go to the hospital for chemo.  In my case, I got headaches, feverish and even more tired in the hour before I was going to leave for infusion.

My appointment was for 5pm.  I got there 15mins early.  But when I arrived at the office, it was like an episode from the twilight zone.  All the receptionists were different, they didn’t know the nurse practitioner I was there to see, they didn’t my Dr’s Physician’s Assistant, and they didn’t even know my doctors phone number. Apparently this office is used by different doctors each day.  Rather than have one set of receptionists and assistants, each doctor has their own set of receptionists and assistants.  I guess they just sit in a cubicle the rest of the time answering calls and scheduling appointments.

So I call up to the receptionist who is in her cubicle, and she says that she will page the nurse and send her down.  15 minutes later I call back, but it is 5:02 and the call goes straight to the message system.  The twilight zone receptionist leaves.  Doctors leave with their bags. You can see where this is going.  Knocking on doors I found someone who knew what I was talking about and who i was looking for.  He made some calls, and actually spoke to her: there was an emergency in the chemo clinic, but she would be down as soon as she could get there.  

About an hour passed.  I was starting to get more psychosomatically symptomatic.  Plus I was getting tired and hungry.  Right when I was really ready to walk out the door I decided to try the open-the-book-when-waiting-for-the-bus technique.  Right when you give up on the bus coming quickly, sit down and open up your book to read, the bus inevitably shows up before you finish the first page.  Its like Law of Nature.  So I announce that to S, who doesn’t quite get me, and I go turn on one of the computers in the waiting room.  They have two public computers to keep people from getting too bored.  And sure enough, right as the first little windows flag shows up in the boot cycle, the door opens and the nurse walks in.

After all that waiting, the injection was really easy.  I’m glad I got instruction, b/c I would have screwed some things up.  I would have pushed the needle in too far.  And not done it at the correct angle.  As is, I didn’t really do it at the right angle.

Pushing the needle in is painless.  As in, I couldn’t actually feel the needle enter my skin.  It was weird that way.  Injecting the IFN stung a bit.  I had to do it slowly.  I did the first half, then I did the rest.

After I did the injection I had this 5 minute spurt of energy, optimism, and other kinds of good feelings.  It was partly b/c it was over, and it was soooo much easier than I thought it would be.  But it was also probably partly chemical. I’m sure there were a lot of endorphins, or adrenaline or whatever that my brain pumped out when my brain groked that i *really* was about to stick a needle in me.  It was so weird to be looking down and think “I’m going to stick this needle into my stomach…”  and then to do exactly that.

Train ride sucked, but not that bad.  I got the headaches for real right as we turned the corner to the apt.  I got some chills, but not that bad.  I should transition to a mild fever shortly.  But overall, not so bad.  Not as bad as restarting.  Which is interesting because I am at the same dose that I was at for the second two weeks of IV, I just take it 3 times per week, rather than 5 times.  I guess the body doesn’t absorb as much when the IFN isn’t mainlined into the vein.

Verdict: Ice Vest Rules!

The ice vest totally worked.  I feel better than I have felt since I returned to NYC, even though I had a full day.

I wore it for 3 hrs running errands in the morning and in in to the studio.  Refroze the ice packs (though I don’t think they fully froze b/c they were stacked on top of each other…). Then I wore it to meet BH for lemonade, ride the subway to chinatown, get a massage, and then eat dinner.  After about 4 hours, all the umph was gone from the packs, so I took it off for the last ride home.

Frankly, I think everyone who gets overheated should be wearing one of these during the summer here.

Yay!

My New Ice Vest: I’m kinda like an Olympic Athlete

The hardest part right now is the heat.  And the worst is walking to the subway, and waiting on the platform.  The commute wipes me out so bad.  At some point this week I had a flash of an idea: an Ice Vest.  P had told me about them being used by elite distance runners before the race, and I saw the riders in the Tour De France warming up with them on.  The athlete idea is that you warm your legs up, but keep your core temp down (extending endurance performance by 21%).  My idea is that I will not overheat, extending performance by huge physical and thus emotional leaps and bounds.

The vest is made by StaCool.  I wore it this morning for about three hours.  On the way to my psychologists, during the session, on my way back, around the house, and then on the commute to the studio.  It kept me cool the whole time.  By the end, between the melting of the ice packs and the pressure of my backpack on the vest, the back bottom of my shirt got pretty wet.  Maybe related to the pressure of the pack.  Maybe just what happens after 3 hours.  Anyway, it kept me cool.  It worked.  I love it.

Me on the subway this morning, with my new ice vest.

StaCool Ice Vest

A studio photograph of the same vest looking a bit cooler than mine:

David Millar warming up in an Ice Vest.

Nike’s new PreCool vest, to debut at the Beijing Olympics

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.

Somehow Saturdays are so hard

I don’t quite understand, but Saturdays are the hardest day of the week.  I make it through a whole week of infusions with high energy and good spirits, and then Saturday I crash hard.  Same as the previous weeks.  I sleep in way too late.  Have no energy.  Cry for no reason.  Can’t eat.  No fun.

Today the plan was to go to the beach.  Really, it was my brother’s plan.  To take KM to the Oregon coast, and to let one of the dogs play in the wet and.  I was the limiting factor.  He kept asking me if i was ready yet.  I was still in my bathrobe.  I knew that we were going to be getting there really late.  I felt pressure.  And then I started crying.  I didn’t want to hold them back, but I aslo wanted to go.  I also didnt want to go, but I didn’t want to give up and not go.  Oh, what a jumble in my head.

I did go.  It was worth it.  The wind was strong.  The ocean was big. The dog was really happy. I slept on the way there and the way back.

x left this morning (no beach), P left to be with his girlfriend’s family last night, and KM leaves tomorrow morning at some really early time.  LK and I are going to hang out on Monday, but other than that, my friends have returned home.  I am, of course, a little bit sad from that.  But I also know that I have all my friends in NYC when I return.  Seven days.

I’m feeling really stifled by my family right now.  I know they don’t mean to.  But it happens. I’m really looking forward to going back to my regular life.

That said, I’m scared to have to take responsibility for so much of what my mother has been helping me with.  From helping me figure out what I could possibly eat, to making it, to doing my laundry, to supporting me emotionally.  NYC/Brooklyn is going to be a culture shock.  It is going to be hard again.  And there are going to be lots of people.