I got a humidifier yesterday. I put about a gallon of water into the air of my little apartment, and fell asleep.
When I woke up my nose was moist, if a little runny. So much better than the barren desert craggy nasty bloody snot crust lesions I have spent the last two months waking up to.
nice mental image, eh?
My godmother sent me her late husband’s scarf for my birthday. Jack passed away several years ago; he had been waiting for, and then had a liver transplant that did not take.  i *do* remember Jack wearing it. I will wear the scarf with the strength and power and perseverance that Jack lived his life with. it is both hugely emotional for me to receive this from her, and for her to give it. and it is probably, in a certain way, cathartic. memory is hard. especially the sweet ones that we want to hold on to, but have to move on from.
i have a box that has three stuffed animals that my ex-girlfriend and I used to play with. they all had names and characters, and histories and personalities. i don’t want to let go of those memories, but at the same time i can’t impose that on someone coming afterwards. and those memories have turned so bittersweet. (and not like all the chocolate i got for my birthday). she is an *ex* for a reason, despite the funny scenarios she could concoct with two stuffed tigers and a dog. maybe some day i will find someone to give them to, and show them their personalities and their voices. (they all have very distinct voices!)
My aunt sent me a scarf for my birthday last year. She had begun knitting extensively when she started chemo for lung cancer. The scarf arrived late, in mid january. That was almost exactly the time I first went to the dermatologist to ask him to look at the bump on my calf. It is amazing the power we can attach to clothing: sometimes I think of that scarf as her way of warning me. Or of welcoming me.
I have been on Atarax for a week, and it is really helping with the itching and the dysesthesia. Atarax is a high powered antihistamine. The Dr put me on 50mg 3x per day, and that was quite a wild ride. I pretty much was stoned and staring at the wall, or sleeping. I cut the dose in half, and am taking it 4 to 5 times per day, and the effects are more even, and i’m less zonked.
The really good thing is that my dysesthesia symptoms are markedly reduced. I guess the idea is that the dysesthesia is happening in the nerve endings, so if you dull the inputs via an antihistamine, it will reduce the chances of the dysesthesia. Or something like that. Regardless, it is working. Which is not to say that I am not having episodes. i have had several, but whereas I was having one bad episode per day, and two to five moderate episodes, now i have one bad episode every few days, and one mild episode per day.
Strangely, though, I have been having more episodes at night; waking up from nightmares in full pins and needles. And generally having restless nightmare filled sleep.
I turned 31. x writes me:
officially in your thirties
because i think you’re 31, yes?
1. your pants start to fall off of your ass and so you spend more of your time than you ever thought possible with this singular task: pulling up your pants.
2. it seems you’ve been privy to eyes that don’t need glasses, but i suspect this curse of seeing will haunt you at some point, too. i predict your thirties for this one.
3. more time for collaborations gone wrong like the email you just sent me from that weird powder-paint-guy. (what was his context anyway?)
4. when good things happen they are REALLY GOOD but
5. when bad things happen they are horrible. oh, but you’ve been living with this for almost a year now. sigh.
6. you think about time in chunks of years instead of chunks of days.
7. your hands start to look old and veiny (have you noticed this yet?)
8. you realize even more than you did in your twenties the importance of your friends and family.this is my way of saying happy birthday to you.
because, dammit, i’ll always be a few years older.
x
I went up to the dr yesterday, and got my FMLA papers signed.
The other goal was to get some drugs to help with the dysesthesia attacks, as well as show him all of my lesions and bleeding sores, and other gross things. I mentioned my dermatologist gave me something for my lesions which had helped a little bit, and another which didn’t. He immediately asked “were they steriods” and i said I didn’t know, and he kind of got interogative with me, asking again “well, you should know if they were steriods.” And I immediately went into a full blown dysesthesia attack. its that confrontation, that conflict, that interogation, that possibility that I (the expert) might have made the slightest mistake. In a healthier state, I could have had it roll off my back. But not now. The slightest confrontation over something as simple as a scheduling confusion sends me into dysesthesia land. Which is why it is close to impossible for me to teach on the IFN. I tried a little bit at the studio, and I just end up clutching my side shivering in a fetal position.
So in a sense it was perfect timing. He actually got to see it happen. And see that it was real. (Maybe my subconscious produced it for him…) He immediately went into support mode, telling me I was doing well, and that if I wanted I could take a week or two break. But I dont want to take a break. It just will delay the overall end point. I only want to take a break if I’m too sick to take the drugs. RIght now my WBC is at 2.5, and holding steady there. It dipped to 1.8 after Banff, but has been steady at 2.5 otherwise. 3.5 is the low range of “normal” so I am still immunosurpressed, but I’m hanging in there.
If the goal was to get drugs, that was a success. He gave me a prescription for Atarax which is an antihistamine. Now that I look closer, it is just a higher potency of the over the counter drug I was already taking (Zyrtec). And it is ‘sedating’ so i’ll be more stoned and sleepy. I’m supposed to give that two weeks, and if that doesn’t take care of the dysesthesia, I start taking Neurontin which is actually an epilepsy drug, which is now widely used to deal with neurological pain. Frankly, the closest thing I can describe my attacks as, are seizures: I am not totally out of control of my body, but I loose a lot of control to the pain, I go fetal, and afterwards I am disoriented and kind of stoned.
The other thing that happened (in the midst of my attack, me trying to breathe and do meditation on the paper on the exam table, while my doctor keeps saying “you’re doing great”) is that I got my FMLA papers signed. My “doctor’s note” so to speak.
We calculated out my treatment schedule, and if I take *no* breaks in treatment I will be done the last week of July 2009. But considering I’ve had to take 4 weeks of breaks in the first 17 weeks of self injection, it is unlikely I will make it through the remaining 31 weeks of self-injection without having to take a break. So realistically, we’re talking an end of August beginning of September final injection. As the drug takes some time to work its way out of my system, my Dr has designated a 1 month recovery period, so he has me coming back to work after September. E.G. October 1st. I will more or less miss the first 5 weeks of the semester. I’m working out the details of what that means. sitting w/ my dr and counting out when I would be done forced all of this. frankly i was very much in denial of the end date. it seems so far away, i felt better not thinking about it. but because it runs up against the fall semester, it is important to address
In San Francisco I was ignored or harassed as homeless when I got the pins and needles and sat in half lotus or lied down in the street.
In Los Angeles, the sidewalk was so dirty and full of glass that I wouldn’t lie down, but I huddled shirtless on the curb and no one paid me any notice.
In New York, as soon as I feel the symptoms coming on I have been popping out of the studio to sit on the sidewalk. The studio is in the prime Chelsea art district. When I sit in half lotus in front of gallery row, people slow and look. They are mostly wondering why a man in a t-shirt is sitting in a yoga pose in 30 degree weather. But some of them stop dead in their tracks, and contemplate me… AS IF I WERE A WORK OF ART! I swear someone almost reached for their camera.
I went to the dermatologist, who called the flaking on my eyes Eczema. He called the lesions on my genitals something else (I forget). He gave me a cream for both. And told me to take Zyrtec for my itching.
And he gave me a name for my pins and needles: Dysesthesia. He said that he has seen it in IFN cases. And he also mentioned some drug that may be useful in treating it. But then backed off, and said I should ask my Oncologist, because it was out of his purview. I forgot the name of the drug.
It feels really good to have a name for this mysterious side effect. And a wikipedia page. That helps too.
It is 7:45 on Saturday morning, and I can’t get the taste of blood out of my mouth. I had awful dreams last night, including a kid who had his classmates pee all over him, then set himself on fire (and died) all for a youtube video, my girlfriend calmly explaining that she had been sleeping with a 17 year old (but she had realized he wasn’t the one for her), and having to sit through an awful experimental noise music performance, and then blood. Dreaming of blood. Dreaming of drowning in blood.
I think that part of your brain that thinks “wait! this might be real!” kicked in. It is the same one that kicks in when you are having a dream about peeing. It kicked in, and i woke up coughing up blood. It was dark in the room, but i could tell the darkness of the blood against the white tissue I rubbed against my mouth.
I have been having lesions in my nose for a couple of weeks. They don’t heal, but they produce these hard angular scab crusts, which often dissolve when I neti. It is raw and painful. Hard to breath at times. And quite noisy.
I spat out a lot of the blood into tissues, and held my nose where the blood was coming from. The jagged scabs made it quite painful. I filled five tissues with coughed up blood. I ate cereal. And I still have the taste in my mouth. I wonder how long I was bleeding before I woke up?
I checked to make sure I had left IFN at her house. She writes:
i have drugs & alcohol but i can’t find needles. so bring.
this would be a funny email out of context!