I realized that I had exactly 24 weeks left of my Interferon treatment, and decided I would mark those weeks with a really really fancy chocolate. I just ate my second one.
I bought a dozen jewel-like gems from Oliver Kita, and will get another dozen after these. I was afraid they might go stale
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.
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.)
I just broke my iPod, and found out that my mileage accounts have been cleared out on a technicality, all within 60 minutes…
At first the iPod breaking didn’t phase me. Am I that meditative? Am I that drugged up?
It is just an object. There is no data lost. The screen is cracked, but I can still navigate and retrieve what little data is on there.
Then I started to feel bad. Defeated, or something. I sat down to make a plane ticket to Portland for July for my last month of IFN injection. O and I are going to PDX for a better climate for my last month of injections. If all goes well and I don’t have to have any breaks (cross my fingers) I will be done on Thursday July 23rd.
In two weeks, I will have four months before I go to Portland. Somehow going to Portland feels okay to substitute for ‘being finished’ even though there will be another three or four weeks of injection there.
I figured that I was flexible with dates, and I had a bunch of mileage to use, so I fumbled my way through the password retrieval process, only to find out that I had *no* miles. None. All cleared out. All 104,000 miles cleared out. On a technicality of a expiration policy that i was never told about. I did the same on my United mileage account, and same story, though no love lost there, as every flight I have taken with them has been miserable, and I don’t even know if I had enough for a full ticket (with the free ticket inflation these days.)
It all sucked really badly. I felt really defeated. And overwhelmed in the face of bureaucratic logistics… is it worth all the headache of calling customer service, trying to get through to a human, and then the physical and emotional trauma of having to play the cancer card. To tell them that I have not been able to fly, so my miles were zeroed out for inactivity, and now i need my miles to finish my drug treatment. I’m getting dysesthesia in my hands as I type this, just thinking about it.
The thing is what I am really afraid of is that something might happen like this on a bigger scale. What if the dollar were to tumble so drastically, my bank account might as well be filled with Rubles? What if the City of New York is so hard pressed in debt that they drop all untenured faculty. I’ve been seeing some of this happening: My 401K from school (which I look at once a year tops) has half as much in it as when I last looked. O just got a pseudo-rejection letter from an academic job search, saying that despite a full slate of excellent candidates, they have decided to terminate their search without hire — They don’t have any money. Job searches are being canceled halfway through. I am trying to get my work into a gallery right at the worst possible time in nearly two decades. And I might be buying an apartment in my building at a moment when buyers and sellers are at a standoff over prices, with buyers refusing to pay current prices, and sellers refusing to admit that their apartments are worth 20 percent less than they were last last year. Admittedly, if I do buy the apartment, it will be at a significant ‘insider’ discount as per the byzantine NYC condo conversion guidelines.
first they take the miles and make them disappear. then they take the dollars and turn them into rubles, and back again. I should rereread Master and the Marguerita soon
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
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.
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)
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.
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.
I reached the half way point in my self-injections. 24 weeks done, 24 weeks to go. 72 injections.
I decided I want to go get the most expensive box of 24 chocolates I can find, and eat one every week for the next 24 weeks. Then (ever the pragmatist) I decided they might get stale, so I will get them in two rounds of 12. What is the most indulgent? Jacques Torres?
It has actually taken me nearly 10 days to get adjusted to the idea that I halfway, and that I have more of this behind me, than in front of me. It was really hard to feel that intuitively for a while. Now I feel it, and it feels good.
Of course, though, the last month, and the next two months are supposed to be the hardest ones. I can attest to how hard the last 10 days have been.