My friend V made me a welcome home sign, and a sweet note. I hung it up above the kitchen. It matches the trim…
So the geeks out there know about unboxing. When you get a new cool gadget, and you think you are the first to get it, you photograph or video your opening the box to show everyone how cool the gadget is (and therefore how cool you are.) Someone actually called it “Geek Porn,” but I think that is best applied to other things.
I have uploaded the full size images, b/c there are no good images on the Internet of what this thing looks like. Believe me, I tried looking.
So here is my Intron A Interferon unboxing. These are the needles for Subcutaneous (Sub-Q) self-injection.
I picked it up at my local drug store. It has to be kept refridgerated, so it was in a brown paper bag that said REFRIDGERATE UPON ARRIVAL. In red. Allcaps. Pretty intense.
(Of note, that sticker was made in Redmond, OR, a town which I have not thought about in probably 15 years, and a town which is now probably just a suburb of Bend…)
Inside the bag were two boxes of Intron A. The prescription was for 4 units, and the tag on the bag said 3 units, but I only got 2! And this stuff is *not* cheap. I have to go back and ask for my third box.
Inside the box is one preloaded needle, with 60 MIU of Interferon. Supposedly it is a little overfilled, so there is actually 70 MIU in there. As you turn the handle it increases the dosage. One full turn is 5 MIU, Two full turns is 10 MIU. Each notch on the turn is one MIU. The pink part at the right functions as the plunger/button.
This is the end that the needle screws on to. Looks like there is some kind of membrane that the needle goes through. Something resealable or something.
And it comes with a batch of screw on needles in their own little individual double walled containers.
On monday I go up to Columbia to learn how to use it. I think I have a pretty good idea, and it comes with instructions, but it will be good to have a professional needle-person walk me through the first time.
I went up to the hospital today. I had an ultrasound to verify the presence of my veins and blood flow in them. My Dr did this experimental procedure that I’m not really supposed to talk about. And this was part of his documentation process.
And I also saw my Psychiatrist, who it turns out has been following the blog. It was pretty amazing to talk about something, and have him reference something else I had written down in here. To complete the self referentiality, we might talk this shout out when I see him in two weeks.
I went in to the studio for a bit, then came home and totally crashed. I got up at 7:30 to make it to my 10am ultrasound. By the time I returned home at 5pm I was totally spent. I had a couple of errands to run, and I was getting ready to leave to take care of them when I realized I had a migrane level headache, and was slurring my words. leaving my to do list and packed bag of things to drop off or mail off, I kind of collapsed onto my bed.
I have taken to napping since I was diagnosed. I have observed that a short rest-without-sleep will revive me when I get sluggish or dizzy or just plain tired. BUT, a sleeping nap is more likely to screw things up more. So going down for a nap is always a precarious thing. This time the undertow was so strong, I had no power to avoid it. I lied down on the bed, and really felt pulled down into sleep. I woke up some time later, and stumbled into the bathroom to take a Tylenol 3 with Codeine, and stumble back into bed. I finally woke at 10pm. It was one of those sleeps where my teeth hurt when i woke, and I was really unsure whether I felt better or worse after it all.
in high school i liked to drive cars really fast. when i came home from college and i was not used to driving, i learned to enjoy going slow. really slow. sometimes i would go extra slow to piss of people behind me who seemed like they were in too much of a rush. now, i am learning to enjoy walking slow. because i am often stuck walking slowly home from the subway.
today i was walking home from the subway and there was another (young) woman who was walking as slow as i was. there were several awkward moments where i was about to pass her, then she was about to pass me. we were very conscious of each other, b/c we we were both walking *so* slow. i couldn’t take it anymore, and i walked even slower, and let her move ahead.
S and i went to the coop yesterday. it was EPIC. an official record: $346.24. it was so hard(core), I almost started crying towards the end. we got three watermelons! (watermelon is the only thing i can consistently eat everytime.) i was totally exhausted. i just sat down in front of the CLIF bars and tried really hard to breathe. i was actually, kind-of, meditating in the Park Slope Food Co-op. Really. S sat down next to me. and we just sat for a minute or so. while the craziness of the co-op went on around us.
today & yesterday I am doing better. maybe it was because I didn’t try to work yesterday. i stayed home and read in bed. (and went to the coop.) also, it was much cooler today. the weather has been kicking my ass so bad. it is the worst that the NY summer can offer. by the time I made it to the studio I was a wilted flower.
i think i can feel the good effects of coming off the drugs, but its hard to tell because the weather has also been better in the last few days, and i have pushed myself less.
That was complicated, let me try that again: When I got back to NYC the weather was so hot and humid, and my symptoms from the Interferon correspond quite perfectly to how I feel in hot and humid weather, so I was really unsure how much of what I was feeling was drugs and how much was the NYC weather.
I went in to the studio today. I was around for a little over 4 hours. Mostly checking in with people, saying hi, writing email etc. Between the work effort and the viciously hot-and-humid commute, it was too much. I came home at 5PM and passed out soon after. Its 9:30PM and I just woke up. I’m groggy and basically need to go back to bed.
I’m in my apartment in Brooklyn. I walked in and had total shock: this is where I live? Really? This is really where I live?
It seemed so much smaller than I remembered, and darker. And nothing seemed like it was where it was supposed to be. And the lobby wasn’t quite as clean as it was before. And there was rust on the entry door. And there was scummy shit in the bathtub that I couldn’t wash away (probably from the construction upstairs). And the upstairs neighbor continues to throw trash out this window.
But my bed was still perfect
I finished my high dose IV Interferon today. It was emotionally great. Now I’m trying to finish packing my bags. My parents have been doing most of it. I’m at the threshold of tears because it seems so overwhelming. And I’m just trying to pack my carry on. Its 11am and I have a 6am flight.
I know I’m really happy to be done, but right now I feel so tired.
Its going to be a long day getting back in NYC.
Almost done. Almost done. Almost done.
Today was the penultimate day. I should have geeked out yesterday and called it the antepenultimate day. Oh, this is what my English Literature degree comes to.
Yesterday, the antepenultimate day, I overheard one of the nurses arranging for hospice care for a patient with pancreatic cancer. She used the word “nonresectable” which I think means it is inoperable. My grandmother died from pancreatic cancer. Hearing the word “hospice” was scary, but also reminded me how well I am doing. How healthy I feel. How far I am from giving in and going under.
Today I gave all the nurses cookies (that my brother made) and the URL to this blog. I gave it to my massage/healer person too. While it was happening, I wanted it to be private from them, but now that I am leaving, I want them to see it. Ah… control.
I’m starting to feel like I’m already transitioning back to NYC. I made a haircut appointment (my hair is wildly out of control.) And I made an appointment with my NYC oncologist so I can learn how to do the self injection pen.
Wait, did you catch that… my NYC oncologist. I’m so bi-coastal I have two oncologists… LOL.
My IV came out of my right arm, so my nurse put a new one in my left arm. Its been poked so many times in the last few weeks that the best vein was on my wrist, just behind my thumb. So I can’t really use my wrist very well. And I am typing this all with my right hand.
It is interesting that this is the first post I have tagged “pain.”