From my Mom

Mom read the last post and sent this:

just wanted you to know
yeah, I read the blog
and yeah, I’ll always be your mom

you just ran a triatholon
a full one
with no training

you are going to be ok
yes, you need to re adjust your expectations of normal

the new normal, remember


and yes, you are jet lagged as well
and yes, you are coming off big time drugs

remember  Jr year in college?

I love you

Just for background, Junior year in college I was addicted to caffeine and worked myself to exhaustion, and spent a week in the hospital. It was pretty bad. I had to go home for a month to recover after I was let out of the hospital. I couldn’t even fly for a week or so after I got out, I was so wrecked. Anyway… I guess that is perfect segue.

Last night I had a pretty solid freak out about feeling overwhelmed. I was watching Stephen Colber w/ O and I got a jarring phone call about logistics from one of my assistants. The news wasn’t really that bad, it just foregrounded the extent to which I was kind of all over the place.  And then I panicked and really freaked out. I started thinking about all the things I need to do. All the places I’m supposed to be. And like Jennings’ post, I felt like everything was moving past me so fast, and I could not hold on to anything.

O and I talked about it a bit. I explained all the things I was supposed to be doing the next day.  And she told me that I shouldn’t. And I protested. Even though I knew she was right. I just couldn’t see how I could just say no.  Or not do things. In this case, it was a conflict between my weekly pyschologist appointment, and a five hour long meeting at the studio that I found out about two days earlier. I rearranged my whole schedule around it, but then realized I created a conflict w/ my psychologist. I tried to call and cancel yesterday day, but got a busy signal both times. I should have known it was a sign that I shouldn’t cancel…

O wrote an email for me, backing out of the meeting at the studio. It was almost impossible for me to send the email. O had to write and send it. I am so afraid of backing out of responsibilities. No one wrote me back to reprimand me. No one wrote me back at all. Maybe they expressed their anger at me privately. Or maybe they weren’t angry at all. Maybe I am just afraid of their anger… I came for the last hour of the meeting. Everything had gone fine without me. I contributed some in the last hour. My presence was helpful, but not essential. My absence did not derail the whole process. It was kind of amazing to me. And I don’t mean that in some self-centered way. I mean that I just feel so obligated to do what is asked of me, that I find it almost impossible to say no.

So it was a good lesson, I suppose.

I am trying really hard to learn from it.

I have said no twice today. I sent them to other people for help. It was good. And each case, the person wrote me back to say that it had worked out.

a bad case of the four o’clocks

I definitely think that something is up w/ my chemistry. I don’t know if it is because I am still jet lagged, or because today is day two of reduced lexapro, or both, but I’m definitely having a serious case of the Four O’Clocks. I can’t really focus my eyes. I’m kind of in doldrums. I went for a bike ride to try to energize myself. I rode myself pretty hard. I’m a little numb now, but I’m still pretty damn out of it.

I’ve been working all day. Today is the first day back in the work saddle since i got back from Europe. But I keep thinking about this article O sent me about slowing down. Dana Jennings writes in his nytimes Cancer blog:

But recovery means wholeness: mind, body and spirit. And I reached a point last summer and fall when I realized that even though I was back at work, once again juking and stutter-stepping my way through the streets of Manhattan, I hadn’t recovered at all.

I thought I had weathered the trauma of diagnosis and treatment, thought I was ready to focus on the future. But my body disagreed.

Physically, I was game, but I soon realized I was going through the motions as I became more and more tired. I felt like a spinning quarter about to nod to gravity and wobble to the tabletop. Mentally, I couldn’t focus: I became shawled in the monochromes of depression. And spiritually, I wasn’t angry — I did want to know what this cancer could teach me — but just right then I couldn’t make sense of my cancer-blasted interior landscape.

I hated to admit it, but I had to excuse myself from the day-in and the day-out if I wanted to fully heal, if I wanted to recover.

I was running too fast O sent it for me to slow down. I feel like I have to work harder to clear my plate so I can then rest.  But it doesn’t work that way does it…

Infections and Fevers

I have this *nasty* infected bug bite on my ankle: i couldn’t walk on friday, so I had to have an emergency trip to dr to get it looked at & get antibiotics. Spent the weekend in bed. Finally walking by Monday night.

Nobody told me not to do my regular injection, which I delayed from Sunday to Monday. (and I did go to the dermatologist Monday, even though i slept through that appointment and arrived an hour late — at 3:30PM!). Apparently the two drugs *do not* like each other. Or maybe my immune system is just that fucked.

I spent the night with a blistering fever, yet shaking with cold tremors. O said she almost threw me in the shower I was so hot (and kept asking for more blankets.) It was the kind of shaking tremor that you just can’t control. It sucked. I couldn’t sleep. Was up for good at 530, but couldn’t really move. Just sitting on the couch trying to meditate some of it away. then at 10am, I fell asleep, and slept all day. today I got up, and felt a good deal better, but still not great. And it has taken me 48 hrs to write this, b/c i keep getting nauseous looking at the screen.

On top of all of that, I left my syringe out – it has to stay refrigerated. I only noticed it late the next day. Two injections worth down the drain, er… sharps container. That’s about $1500 worth of drugs. Good think my co-pay is only $25 for a four pack… It is the only time my insurance has really stood out. That and major surgeries. Everything else they screw me on.


The other good thing is that because I had to do one week of half dose after I got sick (a good six or eight months ago), I have enough extra that I will be able to do all of my injections. I won’t run out.

Can’t Sleep

I’m in this really weird cycle where I alternate insomnia with narcolepsy. One night I’m out like a light, and sleep the whole night through, and am up before my alarm. Those mornings I am relatively full of energy.. Another night I toss and turn for hours before falling asleep, and then waking up late; sometimes i sleep in the whole day.

The strangest part is that doesn’t seem to correlate to my injection schedule. Last night I injected, but slept great and had good energy this morning. The Wednesday previous I spent the entire day in bed after a terrible night sleep.

To make it more complicated, my Dr took me of Ambien, as I was doing weird things in my sleep. The Ambien stuff. Pretty well documented at this point. So I’m scared to take it, in fear of what I will say in my sleep, do in my sleep, or not wake up when my sleep-talking wakes up O.

Two nights ago I gave up: I went on a full apartment search for Ambien. As I have not been taking it for several months O has expropriated my supply (as I suggested). But when I went looking for it, it wasn’t in any of the medicine cabinets, toiletry travel bags, or anything. I didn’t want to wake her up. I ended up taking more Klonopin and some Atarax and tossing and turning myself to sleep downstairs.

Sometime in the middle of the night, O came down to make sure I was okay. I was so disoriented, I couldn’t form complete sentences, and for an irrational/chemical reason was on the verge of tears. I tried to explain, but I only got out half sentences. And repeated those half sentences several times. Then stumbled off to the bathroom (nearly falling) and coming back and crashing out again. I worried that I freaked O out, but knew that she had seen this before from me. We talked about it in the morning, and I think I explained myself, in so much as my irrationality could be explained.

She showed me where she keeps her Ambien. On the bedstand, in a decorative metal jewelbox like container. It is both Vienna Seccessionist and Flower Power at the same time. And it is full of Ambien. I just took one. Well, half of one. Right before I started writing this.

I think I will go meditate for a few minutes, and try again

A lesson I am trying so hard to learn

Addwag writes via email:

PS i just read your blog-

why in gods name are you emailing me about my stupid questions when you feel terrible? although I appreciate it, please next time, it can wait, I promise..  send me an email that says something like (I will write it so you can just paste the reply in)

“I feel like shit today and I shouldn’t be on my computer so ping me another day when I don’t feel like I am dying of a rare disease you get from monkeys in the congo”

sorry- but us overachievers have got to learn to force ourselves to stop working sometimes.. xoo

if there is anything I can do for 2,000 miles away let me know, promise?

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.


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.

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.

I Made Dinner

Mushrooms and Ravioli

I made dinner, after I got home, when I was tired. I didn’t order out. I didn’t get something from the deli counter at the fancy place near the subway. Okay, the ravioli were from the freezer, but I cooked them. And I cooked the mushrooms. And it all came out nicely.

I was feeling really low-energy when i got home, but I kept my focus, and went through the motions. And ended up with FOOD!


Shattered Bowl



My hands are so beat up with lesions and cuts, and my skin is so thin and dry, I decided to use gloves to wash the dishes. It seemed prudent and responsible.

The first dish flew out of my hands, and crashed all over the floor. It was one of the big cereal bowls from my set. The set I grew up with. I had to concentrate really hard to think "it is just an object. do not let this make you fall apart. do not cry."

This is the second time today I had to do that. I had the same feeling, and response when I cut my finger, right under the fingernail, on the edge of a cardboard box. Cardboard cuts me! That’s how thin my skin is.

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.