finally a scab

The hole in my skin left by the mole that was removed 2.5 weeks ago is finally starting to form a scab.  It was infected and raw for most of that time.  The Interferon prevents the healing of wounds.  Which is why I had to wait extra time until my surgery scars were healed before I started.

Surreal to have a pretty small (.5cm diameter) wound take 2.5 weeks to *begin* healing.  BUT, I’m just glad that I don’t have to take a drug holiday for it to heal.

Forgetting that I am Forgetting

i’m kind of rough.  back up to full dose again, post immunosupression.  been experiencing a whole lot of side effects.  lots of physical discomfort.  (that’s a nice euphemism.)

O told me today that i have been forgetting things.  as in, she tells me things, or i do things, and then don’t realize that i have already been told this, and ask about it.  or don’t realize that i have already done something. (or more likely: not done something.) i mean, i knew before i was forgetting things.  but now, it seems that i am forgetting things and *not* realizing it.  this has been freaking me out today.

also, lots of pinprick sensations.  the heat rash + hot flash thing.  in the middle of public i just want to pull off all of my clothes and scratch frantically at my skin.  sometimes i pull off all of my outerlayers, and scratch at my skin under my undershirt.  only in new york, right?

actually i wish i was (sort of) in china.  i mean, it would be much hotter there, but in the summer the men in china all pull their shirts up over their bellies.  i think that is the most brilliant move.  all these old men with formal slacks, leather shoes, pulling their shirts up over their bellies.  their nipples stay covered!  but they get some cooling.

Mouth Sores Redux

I have mouth sores again.  This time its not ulcers like the previous two times.  But a swollen bump in the right side of my tongue.  More towards the bottom, but inside.  It feels like a sebacious cyst in hardness, but it hurts to the touch.  And it appeared rather quickly.  Probably just another viral infection, which will hopefully pass w/ none of the fanfare and asskicking of the last one.

In other news, I switched my injection days to Sunday, Tuesday, and Thursday evenings.  I was going in to the studio Tuesday and Thursday after injecting the night before, and it was just plain not fun.  So I switched so I can lay low the days after injection, and be fresher when I am in the studio.

Interferon’s History

From O:

Uh, this was the first google result, but not the one i intended:

http://query.nytimes.com/gst/fullpage.html?sec=health&res=9806E7DB1239F932A35753C1A963948260

it’s from 1985! it said “‘It’s been a medication in search of a disease.'”

shit, and look at this from 1983:

http://query.nytimes.com/gst/fullpage.html?sec=health&res=9807EED71239F931A15750C0A965948260

early AIDS crisis! oh wow, it contains the sentence, “Most researchers
believe AIDS is caused by an unknown virus.” actually, that’s a super
interesting article, from an historical perspective…

i am totally liveblogging this google search!

ok, actually, there are almost 6,000 NYT articles related to IFN:
http://query.nytimes.com/search/sitesearch?query=interferon&srchst=cse

super interesting. lost of uses, lots of side fx…

this is the one i was looking for:
http://health.nytimes.com/ref/health/healthguide/esn-hepatitisC-ess.html

yours in sleeeep

My Interferon: Mega Packaging

This is how my Interferon came.  Super well done packaging.  It had been shipped overnight from Florida.  The ice was largely unmelted.  As an experiment, I left the ice in the styrofoam, and it took two more days to melt in full.  72 hours of cold.

I was actually quite anxious about making sure i was able to get the package, and that the drugs would be cold, etc.  It was a *huge* relief when I saw that it was so well packaged.

This arrived about two weeks ago.  I just finished my first week back on the drugs.  It went fine.  I’ll ramp up from 10 MIU to 20MIU next week.

interferon shipping box

interferon shipping box

Inteferon Dreams

I restarted my IFN last night.  My mom arrived yesterday.  This is actually a coincidence.  But it was really nice to have her here while I tried to pretend i wasn’t nervous.  I can’t quite tell whether i was actually calm, or was in denail.  previously it was clearly denial, w/ a lot of pacing.  but today, after a week of meditating, and my mom’s comforting and distracting presence, i think i might actually have been somewhere in the middle.  close enough to the middle, that I don’t know.

I just woke up.  Its 7:30AM.  I have a headache.  I had the usual chills, though less fever than normal. woke at 4:30, and only kind of slept after that.

Clearly my unconscious was churning through the implications of restarting the IFN.  I had a series of dreams about IFN, science, and weakness.  One I only remember as me on a mountain bike, trying to climb a hill, and getting passed and yelled at: this is about the bully who rides in Prospect Park, and who yelled at me last time i rode there.  I remember one about camping with my mother in snow (she has car camped w/ me once or twice tops.)  But the best one was another naked school dream.

I was in the audience at the front of a lecture hall listening to a lecture on the immune system.  It was a young female professor.  She went through all of the obvious functions of the immune system, the lymph nodes, whats in blood, red blood cells, white blood cells, platelets, and some other stuff that i remember from my many bloodwork results (billyrubin, leukocytes, neutraphil, etc).  Then she talked about Interferons, which stimulate neutrophil?  I forget.  I was repeating the pseudo-high school science lesson i’ve gotten over the course of this process.  Things I never really knew.

Then the lecture happened again, except this time it was a song i knew.  But only kindof.  I was singing along to the lyrics to comfort myself, b/c at the same time it was the song, it was also the same immune system lecture.  The young co-eds to my left and right were indignant — I mean, I am tone deaf, and didn’t know half of the lyrics to whatever song it was.  One of them (on the left) said, “do you actually know this song?” in a tone that made it clear she was really saying “shut up asshole.”  When she got to the part about Inteferons, and the side effects of Interferon therapy, and listed them all, and talked about how hard it was, i said out loud “I have that.”  And I started crying.

At that moment, the class was dismissed, and the co-eds kind of dissappeared, but kind of registered their surprise and also disgust/fear of me. I get up, and realize that i’m only wearing a t-shirt.  chest is covered, but the choice bits are poking out the bottom (LOL).  as per usual with naked dreams, i’m not that embarrassed, just concerned about the difficulties it sets up.  I try to get out of the lecture hall, which actually is surrounded by an airport like structure, with big pillars, and caverns, but no gates or planes.

Somehow I realize that I’m supposed to teach the same class for the third time around.  I hear “well, if your such an expert, why don’t you just teach the class.”  I try to escape via the caverns in the edges of the building, while someone comes in singing with a choir from the entrance door, and makes their way to the dias at the front of the room.  They are singing an a capella motown/gospel song; all i could make out was the refrain: “Here comes the Doctor.  Here comes the Doctor.”

I escape to the outside (maybe i magically get pants, maybe not, i can’t remember.) The young co-ed on my right comes up to me on the path away from the big building and touches me with a big rolled up sheet of paper.  She offers it to me.  I open it.  It is that 2 foot by 3 foot size of paper that comes in pads and is used in classrooms in lieu of a chalkboard/whiteboard.  There are words on it written in in black whiteboard marker.  I don’t remember what it said.

I’m hungry now.  I’m starting to get some fever action.  Going to eat cereal and lie back down.

Immunosupressed = True; Neti Pot = FAIL!

i spent the day up at Columbia.  no fun.  i just heard back from the doctor, and my white blood cell count *was* low.  The cut off is 3.5, and I was 2.8.  I think its called Neutropenia, right?  Or is that just a suppression of one type of white blood cell.  Everything else was fine, chest x-ray was fine.  Anyway, I’m off the IFN for the week.  I go back on Tuesday for bloodwork again.  If I’m back to normal I will restart the IFN at a reduced dose and ramp back up.

This evening, generally feeling much better than the past few days.

As per my naturopath’s instructions, I got a neti pot and tried to use it, but had somewhat of a comical failure.  I followed his instructions, and also watched a demo on youtube, but I couldn’t get it to work right.  It would just stop up in my top nostril and not go out the bottom.  In one attempt it ran out the back of my throat into my mouth, that was the closest I got to any flow.

If you know  how to use one of these things, and know what I am doing wrong, please comment! (LOL)

Along the way, I found a funny one.  Watch all three rounds of irrigation…

P.S. I weighed in at 203.4lbs.

Still sick

I’m still really sick.  I’m better than I was before, but I am still dizzy and coughing up chunks.  And I’ve got sores on the inside of my mouth again.  I’m on so many drugs right now…  but it doesn’t seem to be getting better, just masking the symptoms.  I have to go in to the doctor tomorrow for bloodwork.  Something is clearly wrong, I just hope it isn’t really bad.  Hopefully it isn’t.

Bad Cold, Infection or Immuno-Supressed?

My cold in the mountains just kept getting worse.  I was burning through kleenex and cough drops, and had lost my voice completely.  I injected my IFN, and in a panicked moment after a sleepless night of chills and with an excruciatingly painful sore throat I decided to fly home a day early.  I made some frantic phone calls to the front desk, the airport shuttle and and the airline.  I made the decision yesterday at 6am, and was on the shuttle to the airport at 730.

By the time I got home it was even worse.  My Dad called and insisted I call my primary care physician and get some antibiotics.  The Dr. on call (it was 9pm on Friday) at first was hesitant to proscribe anything, because he was concerned that I might be immuno-surpressed from the IFN.  I haven’t had any bloodwork in over a month, so I couldn’t tell him for sure.  In the end he wrote for antibiotics and some codeine cough syrup.

The codeine helped immediately, and it seems like the antibiotics are helping today.  I’m feeling better.  Still up and down.  Throat still super painful swallowing.  Yesterday I felt so bad that anything feels better.

I definitely need to go see the dr next week.