Category: daily update

Everyday is worse than a hangover

a few nights ago I got quite drunk with O. we were going to have a nightcap and hit the sack early, b/c we were both stressed out. and then as we were finishing that drink, my house guest adam walked in, and we poured another round. then more. then more. i think we did half a bottle of whiskey.

i haven’t drank like that in over a year for sure. i cut alcohol out once i started to get anxious pre-surgeries. and it just lost its appeal. since then it has hurt my mouth too much to drink, and wine has made me feel terrible, even when i have just a sip. but i have discovered that if i drink straight bourbon my mouth is numb within a couple of sips, and after that i can’t *feel* the burn.

so we slept late the next morning. we were going to head upstate early, but that didn’t happen. O rolled over and said “oh, i’m hungover” and i said “yeah me too” and sprung out of bed and said “but i feel like shit every morning, so i’m used to it!” I laughed, and old-man-shuffle-walked to the bathroom (like I do every morning), took my morning tylenol and advil. and made us breakfast.

O couldn’t get out of bed for an hour or so, she was so hungover. i, on the other hand, felt like it was just another day. same old same old.

i could choose to learn two lessons from this:

1. i really do feel really bad every day
2. i might as well drink every night

i’m not sure which is the better lesson

The Cancer Card (Literally)

In late December, inspired by Adrian Piper, I made a card to help communicate to people what was going on with me. Actually, I made two, but I have only printed one. One says “I HAVE CANCER / DO YOU MIND / GIVING UP YOUR SEAT / THANK YOU.” That one is for the difficulty of trying to get a seat on a crowded train – because I *look* fine on first impression. Closer inspection indicates otherwise…

The other one says “I HAVE CANCER / THESE ARE SIDE EFFECTS OF THE DRUGS / THIS IS NOT AN ATTEMPT TO START CONVERSATION / TALKING ABOUT THE SYMPTOMS MAKES THEM WORSE.” This is for when I am having a dysesthesia attack, and am scratching and writhing about. People stare at me, which makes it worse. Or they get up and move to the other side of the bus or train. This will maybe make them realize I am not dangerous, crazy, contagious, and/or a terrorist (LOL).

For the most part, I try to ride the subway on off peak hours. I’ve had to take the subway in for a few 9AM appointments and meetings, and things get crazy.

What is interesting, is that so far the “give up your seat” card has not worked at all. If anything it has been a hinderance. I think people think I am trying to collect alms from my poetry or something. People don’t even look at me, or they just stare.

The only good thing is that it alleviates the famous Stanley Milgram effect where the person asking experiences huge anxiety.

So far one younger Latino man got up for me. One white man didn’t but when the woman next to him got up he got up too and they both stood. Since then I have had three white men shake their heads at me. I thought I would as men because they are tougher or something. But they seem to largely be unsympathetic assholes. Which is the reputation of the NYC male.

When they say no I repeat to them my situation. It just goes right through them. Today I looked this williamsburg dude in the face after he said no twice and called him heartless and selfish. Maybe I need a different card to give out. One for people who say no. That lists all of my symptoms. How long my treatment goes on for. My prognosis. Etc. About how I may look sound but I’m not. I am a grandma inside. Weak, tired, carrying more drugs, ice packs, and healthcare paraphanalia in my bag than clothes or books.

This city is heartless.

AN UPDATE:

6 weeks later, I have given up on the card. It is a nice little bit of poetry, but people think I am trying to beg for money. I have developed a new strategy. It is two part: 1. avoid taking the train when there isn’t going to be a seat on it. 2. quickly identify the youngest person who is not asleep, and who is not listening to their iPod and ask them. The other thing I have started to do is to say “I am sick” first. Then “I have cancer, it is hard for me to stand for long periods, can I please have your seat.”

This has had a pretty high success rate. Often people seem resentful, but they do it. I said it all to one dude, and he gruffly responded “whaddayawantmetodoaboutit?” And this glammed out black chick standing up next to him with crazy hair wearing a remarkable fur coat and heels immediately said “he needs to sit. get up and let him sit.” and he did it. resentfully.

The hardest part, actually, is getting on trains that are so cramped during rush hour that I can’t even make my way to find someone who I could ask to get up. I barely make it through those rides. But I make it, and I’m proud of that.

And then there was the time that I had just negotiated for a seat. It was right next to the door. And this woman got on and stood in front of me. My face was right at her belly level, and I noticed she was just starting to show a pregnancy. After maybe 15 seconds she said “can i have your seat, or i’m going to be sick.” I looked at her, confused, regrouped, stood up, and said “you may have my seat, but you should know that I am probably the only person on this train who is more sick than you.” I went and stood in the corner. That sounds really passive aggressive, but that wasn’t how it came out. It was more of an exasperation with entitlement, and the Milgram effect — even though I had sought out and negotiated for that seat, I was still willing to give it up immediately when asked.

Fingernail symptoms

fingers1

fingers2

My fingernails are growing in like soft shell crabs, with only the thinnest of barriers between me and the world. The nails that were there before I started the IFN have a slight pinkish tint, and the transition from nail to no-nail is pretty rough.

You can also see the lesions and pitting in at my fingertips. The pointer finger is from zippers and buttons, the ring finger is from typing (especially pressing shift and command)

Undermedication

I just realized that I have been taking only 12.5mg of Atarax in the morning for the last week, not 25mg. I switched over to a new pill size so i wouldn’t have keep quartering these 50mg ones, and I think I just got confused about which were which, and ended up taking half the usual morning dose.

That might explain why my symptoms have been worse this past week.

EPIC bowl fail

EPIC bowl fail

I broke one of my bowls b/c I was using rubber gloves to wash my dishes. I found one for sale on ebay for $100, and posted that image. I was going to buy it, but then I noticed one for $40. It looked identical. I bought that one instead. It arrived, and it was… miniature. I guess you get what you pay for. And again, with this damn broken bowl business, I remained calm, didn’t cry, didn’t get angry, didn’t let it break me. I kept my sense of humor. But I still need to get a replacement for the bigger bowl.

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.

Current Skin Conditions

Eye Eczema

Eye Eczema

My eyes flake and crack at the folds. This is a pretty average state of affairs. It is better at times, and worse at others. It goes up and down every few days. Normally this is treated with a steroidal cream, but I am not allowed to take steroids. So I just have to grease my eyes up as much as I can

Leg Lesions

I can’t seem to get a really good picture of how messed up my legs are. They look like I have been sleeping with some blood sucking insects. For weeks. They are just covered with these semi-open, semi-healed wounds. And I have scratching problems, so they keep being reopened.

A list of Side Effects

A list of Side Effects that I have to tell my various doctors about.  Compiled with O’s help.

  1. muscle aches (strained bicep)
  2. joint pain
  3. Finger nails are not growing in thick enough
  4. lip and tongue cuts
  5. infected lesions in ear canals
  6. nose crusties
  7. bloody noses
  8. nose infection/pain
  9. memory problems (persistent)
  10. slurring of speech
  11. loss of balance/falling
  12. ongoing lesions (legs, arms)
  13. hair loss
  14. libido
  15. irritability + spaciness VS indifference + apathy
  16. loss of appetite
  17. broken tooth

New Side Effects

today was the end of week 22 of self injection, which if you count the 4 weeks of IV high-dose, makes it 26 weeks, which is halfway through the year.  I kind of think of them as two different events.  the 4 weeks (which was really 6 weeks).  and the 48 weeks, which is actually going to be closer to 55 weeks, with all of the breaks and drug holidays i have had to take to let my body heal.  The one number that is undeniable is I have exactly six months left.  Half a year.  And that going forward it just gets less.  I’m at the top of the hill, and everything is downhill from here

despite that uplifting bit of cliche’d symbolism, i’m feeling pretty shitty right now.  my body is really falling apart.  i strained my right bicep, and the interferon interferes with all of my healing processes.  So strain not healing, and as i tweak it by accident it gets worse, so now i think i’m going to have to put it in a sling to protect it.  more hassle.  more atrophy.

my fingers are falling apart. more lesions, and split skin.  that wont heal.  same with my face (eyes and mouth)

the weirdest is that i chipped a tooth at the front of my mouth sometime about 48hrs ago.  probably in my sleep.  it was a fake tooth – a porcelain covered gold crown from a root canal, so the good news is that the tooth is long dead and i don’t have to worry about that.  the bad news is that the break created this sharp hook like protuberance that is snagging and cutting my tongue when i talk or eat.  so not so much talking or eating until i can get into my dentist

Bleeding Zeppelin

blood

I just woke up.  With a bloody nose and an irrational desire, no… need, to listen to Stairway to Heaven.

I found a quick mp3 that was so over-compressed it almost sounded like it was live.  It was kind of an amazing experience.

And I guess the lyrics are about life, power, death and choices, and “its not too late to change road you’re on.”  I realized that for probably the first time just now.  Because I haven’t really listened to the song since the last song of my last High School Dance.  Every dance ended with that wistful “and she’s buy-uy-uy-uy-uy-ing as stairway to hea vun.”