Tag: sick

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.

Feeling like crap

My mouth sores are mostly gone, but now I can’t swallow without pain on my left side of my throat.  I called the Dr, and these are not conventional side effects from the IFN. I was told to treat it like a cold, and if it is not gone in a couple of days, to call back for an appointment.

I’m queasy.  I’m wearing my ice vest inside my appartment with the A/C on.  I need to eat more food.  And I have to shoot up tonight.

I remember what AW said to me at one point:  “You will have good days, and you will have bad days.  And you just have to accept that somedays the best you can do is to lie in bed and cry.”  We’ll I haven’t cried yet today, though maybe that would be a satisfying release.  I think I’ll go eat some watermelon instead.  And then lie in bed.

Day 17: Hi Fives from the Naturopath

I was talking with my naturopath today, and right after he told me how well he thought I was doing, he reminded me how difficult what I have been through was.  reiterating that no one knows how hard it has been but me; not him (who had cancer at 31), not my mother, who has had to watch, etc.

A year ago my ex girlfriend went from kinda-sad to severely-clinically-depressed overnight.  I’ll skip the dramatic in-the-middle-of-the-night catalyst event, as that was too big and messy for this analogy.  The point is I didn’t get it.  I didn’t understand what she was going through.  I had never been clinically depressed.  I did not know her experience.

The breaking point with my ex was when she called me in the middle of the afternoon when I was at the studio, demanding (there really isn’t any other word) that I come home and make her some chicken.

This i understand now: when you are sick, and have no appetite, and all of the sudden you want something, that thing becomes the most important thing in the world.

This I understand now: when you are sick, and you cannot get something for yourself you feel helpless,  When that illness is psychological, you feel doubly helpless.  When someone does not attend to you, you feel triply bad.

The argument unfolded without these two kernels of knowledge that my cancer has given me.  The highly condensed version of argument went something like this:

me: Can’t you just order some chicken from the place on the corner.
her: If you can’t come take care of me, I will find someone or go somewhere where people will take care of me.
me: (silence) (sigh) okay, I need you to do one thing
her: (some shouting about how she is sick, and she can’t do anything)
me: Take the chicken out of the freezer.

Then I took off on my bike, leaving my assistants at the studio.  That bike ride was the one where I intentionally hit the guy in the suit on the Brooklyn Bridge.  This is the only time I’ve intentionally hit a pedestrian.  He was in the bike lane, walking towards me.  He looked up at me, made eye contact, then went back to using his Blackberry.  It all happened at the threshold of conscious decisions: I took two hard pulls on my pedals, and subtly dropped my right shoulder and clocked him.   Hard.  I heard his blackberry smack to the deck and skittered off in a freefall into the East River (Its okay, the company probably paid for it.)  I didn’t look back to see if he was on the ground.  I wasn’t.  And I had chicken to cook.

The bridge shouldering is both one of my favorite stories to tell, and one of the lowest things I have done.  Funny that.

But the real point of this whole story is the the other thing I understand now that I did not then:  no one person can take care of someone who is sick.  It is just not possible.  It is too much work.  It is too emotionally tiring.  It takes a team.  It takes a family, and I mean that in the biggest sense of the word.

Weekend 1, new side effects

Last night I discovered two new side effects: a rash on my arms and a swollen tonsil.  Only my right tonsil.  Swollen like a little ball.

Apparently the rash is common.  There is another woman who is doing the same Interferon sequence as I am and apparently she developed it on her arms and her legs on Friday; I was unaware, as I was asleep.  I got it Saturday.  Right as I was going to sleep.  I mentioned something about itchy arms, and my mom sprang into motion.  We went searching for the benedryl cream.  It turns out mom loaned it to the neighbors the day before.  So my dad went over to ask the neighbors to borrow it back, but they couldn’t find it.  So then he goes off to the closest 24hr pharmacy (oh, for this I miss New York.)  And about three minutes after he leaves the phone rings and it is the neighbors saying they found it.  I tell my mother, who calls my dad on the cell phone.  The last thing I hear before the Ambien drags me under is the sound of my Father’s cell phone ringing in my parents room, and my mother quietly cursing.

I spent almost the entire day in bed, and ate very little.

In the evening, I rallied and went with my parents to a marriage reception for a family friend. There were a couple of people there who I wanted to see, a ton of people I didn’t know, and almost no one in-between. I made it an hour.  i was fine and then all of a sudden I knew I had passed my threshold and had to go.  When I arrived I had a little jump in my step; I was alert and ready to handle whatever social stuff might come at me.  By the time I left I was shuffling my feet, and had my arms wrapped around my torso in self-comfort/self-defense.

I was proud that I made it at all.

Chemo report day 2

It is wednesday at 1pm.  I leave for my third chemo treatment in an hour.  I feel like total shit.

Yesterday seemed like it was going well.  I woke up feeling okay.  Not 100%, but kind of like I had a hangover.  I felt pretty okay going in to chemo.

While I was there I met a man named Bob who had finished the full Interferon sequence two months previous.  He was in just to get IV fluids.  He was still experiencing fatigue.  He offered to answer questions. I asked him if it got better or worse, and he said that after the four weeks of high dose it pretty much stays the same.  The first week is the worst. The fever and chills get better, but the fatigue builds through week four and doesn’t go away.  I asked him if he had been able to go to work, and he paused for a bit, and said kinda: 3 to 4 days a week, for 5 hours a day.  He said that by 2pm you are just done.  Not physically tired, just done.

He remarked at how young I was.  He was the next youngest, and he was mbe 50.  Everyone else was in their 70s and above. The place was full, and loud.  I was happy that I could meditate through it the way I did.

He also asked if I had a history of clinical depression.  I told him that I didn’t, but that I had been put on prophylactic antidepressants by my Psychiatrist.  He asked which, and I told him Lexapro.  He noded, and said that is what he was on, and that it helped.  Everyone asks about the depression factor.  It must be serious.

Other than Bob, chemo was uneventful.  We left and got home on time.  I ate earlier than the day before.  That helped a lot.  I started to get a headache, as expected, but it wasn’t as bad as the day before.  The headache built, but never peaked like it did the first day.  My friend C came over, and we had a nice time hanging out.  I haven’t seen him since Thanksgiving.

I felt so much better.  I started to think this whole thing would be a piece of cake.  right…

I curled up in bed and didn’t fall asleep.  All night.  I was restless, and nervous. I was afraid to take an Ambien on top of the Klonopin, so I didn’t.  And so I didn’t sleep.  As the night grew on and on, I tried music.  I got up and then tried to go back to bed a second time.  I even tried masturbating, b/c sometimes that release lets me sleep: I couldn’t even come b/c my left hand has the IV in it and it hurt too much to hold myself.

And plus, by that time I was getting cold.  I didn’t really realize it happening, but I got cold.  Really cold.  By the time I realized it, I had the chills.  I put on an extra blanket.  But was still shivering. My dad came in at 630 to get me to take my next set of tylenol, but i was already wide awake.  He seemed hurt that i hadn’t wakened him to put more blankets on me, but I didn’t even realize how cold I was.  He went back to bed, and I put two more blankets on my bed.   Six total, I think.  Mbe seven.  Still cold, though slowly warming.

When my mom came in around 8pm with the dogs I finally was warm.  I held one of the dogs for a moment, before she ran downstairs to go out for the morning pee.  Then I finally fell asleep for two hrs.

I woke with a start at 10.  Confused about where I was and what time it was.  I knew I had to be somewhere, but couldn’t remember where and when.  After jumping out of bed, I remembered I had physical therapy at 11.

Today I really am scared of the chemo.  I was full of energy the last two days.  Today I need to get my energy up.  I feel like hell.  Like the worst kind of hangover.  No sleep.

Time to rest for the remaining 40 minutes before I have to go.

ADENDUM:

I leave in 5 minutes.  I took a shower, changed my clothes, and pretended I was getting dressed for a sporting competition.  A soccer match.  Or a ski race.  It worked.  I’m amped up.  I know I’m weak underneath, but I’m pumped on the surface.  Ready for this.  Ready right now.  Tired, but ready.

Time to go.