Everyday is worse than a hangover

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

Sharps

spentdrugs02

spentdrugs01

Somehow I was never given a sharps container. So I have carefully collected my spent needles, and syringes with the intent of taking them to my doctor for disposal. I did actually take them to my doctor, but I get so tense when I’m there I forget to ask a lot of questions, and do things like dispose of my sharps.

Can’t Sleep

Its late, i’m up.  Tossing and turning in bed.

I was thinking about the blog.  I was thinking about being done with treatment. I was thinking about how I will have to transition to a new state of not-quite-healthy-forever.  All my lesions will go away.  All my dysesthesia will be under control.  I’ll have a rough time coming down off of my Klonopin, and I’ll get my sex drive back.  But I will still be living with a 15 to 30 percent ‘rate of re-ocurrance.’

I don’t want to do this again.

Depending on how you count, next week is halfway through the 12 month treatment, or two weeks later is halfway through the 48 week self-injection sequence.

And the end of February is the one year mark since I was diagnosed.

I don’t want to do this again.

EPIC Craigslist FAIL

So I posted that message to Craigslist, trying to find a home for the extra IFN in my injection pens.  I had he best of intentions, but boy was I not thinking.  Here are a couple of the 10 responses:

From Laurence:

Hi,  Your heart is in the right place,  but the infection risk of someone else using your partially used pens is HUGE!!!!!!  Please take the ad down ASAP before some less informed actually takes you up on your generous offer.  I would hate to flag you,  no medications to be listed as per craigslist rules, I will trust you to do the right thing.  I work in healthcare and an fully aware of the cost of this stuff.  Please don’t put someone else at risk.  Great idea,  but there has to be another way to help folks.  Lobbying in albany or DC or contact local politicians to force Govt to  further subsidize these meds would be a great start.  Best of luck to you.  Happy thanksgiving!

From Gerthvan

I don’t need the interferon, but I think you are terrific.  Have you asked your doctor if there is a patient that might could benefit?  All the best to you!  Happy Healing and Happy Thanksgiving.  You are a good soul.

From Gigzilla

Hello,
I admire your generosity, but if this stuff is in a syringe (self injection pen??)  it would not be wise for more than one person to use it. If I am mistaken please forgive me. I am sure you mean well.       G-47

From Anthony

Very, very nice and thoughtful.
Hope you get better and Happy Thanksgiving.
Anthony

So of course the Hep-C patients would be well versed in the nuances of sharing needles, sterility of needles, etc.  And me, the silly Melanoma patient is clueless.

I freaked out when I realized this.  I had a total pins and needles attack. So fucked up the thought that my attempt to help someone could make them worse.  Fuck, what a mind trip.

Back when I found out I would be injecting my dear friend KM was all excited to teach me how to hit a vein (no he’s not a nurse, no he doesn’t hit veins anymore) but was dissapointed when he found out that all I had to do was jab it in and press the plunger.  The things that IV drug users know that come in handy.

Midpoint / Birthday

I’m thinking of doing some Enron Accounting, and coming up with some framework in which my Birthday (Dec 22) is halfway through my treatment.  So I can have a party.

I just completed week 12 (of 48).  By my birthday I will be in week 19 of 48.  BUT if you count the 4 weeks of IV IFN I did, I will be at week 23 of 52.  Which is almost 50%.

Maybe I wait until January 15th, and then I will be very solidly  halfway through.

In other “halfway through” milestones, I’m in my 9th month of this.  And I have about 9 months left of the IFN.  So I am kinda halfway through *something* now.

39 weeks to go…

i just finished my 9th week of self injection.  18.75% done.  39 weeks go to.

if you count the 4 weeks of IV IFN, i’ve done 13 weeks, which is exactly 25% of the 52 weeks of treatment.  of course, that doesn’t count my time on drug holidays.  i started the IFN on June 16th (the day before I started this blog…) Which is 4+ months ago.

I have at least one month of drug holiday time in there.  it feels like i was on holiday for more than that, though.  i guess it was just one week in the IV IFN, two weeks in between IV and SubQ, and then two weeks when i got back from Banff and was super sick.  I guess the first week back on the IFN felt like a holiday b/c I was only on a 10 MIU dose.

i was diagnosed on feb twenty-something.  I got the first call on the 20th, but didn’t formally hear the words “you have cancer” until the 22nd.  so that makes it 8 months i’ve been dealing with this.

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.

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.