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.

Medicinal Mushrooms

i got chinese herbs to take.  apparently one of the hot topics in herbalism is mushrooms.  certain mushrooms are immunostimulants.  three types in particular are the focus of most of the studies: shitake, maitake, and reishi.  i regularly saute the first two, but i’ve never seen reishi before.

ganoderma_lucidum

so i was in chinatown two days ago, and i thought to stop into one of the dried good stores.  frankly i was expecting total epic failure, but the first person i talked to got very excited and walked to the back of the store and showed me this box.  and explained that it was the extract of the red reishi mushroom.  the spores are ground up in capsules.

he also tried to sell me some other herbal supplements for “manly potency.”  i passed.

Reishi Mushroom Extract

Strange but successful bath

My landlord is trying to fix the leak that is coming from my bathroom.  While I was gone today, his contractor decided that it was necessary to rip out the shower as well as the sink.

I took a bath tonight.  A pretty strange bath.  But the first bath I’ve taken since the first surgery in February.  It took forever for the Dr. to deem my scars healed enough to be in a hot bath.  And then it was just too darn hot to *want* to take a bath.  And then I was afraid that the heat from the bath would trigger pins and needles.

Well, the bath wasn’t super hot, but I did stay in for a while, and no pins and needles.  Which is good.  I feel relaxed.

bubble bath

Freezing out the pain

im sitting in the server room at the studio, where it is perpetually 64 degrees, or cooler.  there is an industrial AC unit that runs 24/7.  even in the winter.

i kinda figured out how to deal w/ the hot flashes and pins and needles when i wait for the subway.   it seems to happen every time i go into the subway, about 45 to 90 seconds after i walk onto the subway platform.  so i decided today to just hang out at the top of the stairs until the train was passing.  then i shuffled down the stairs into the subway.  no pins and needles on the subway platform.

BUT

the pins and needles hit with a fucking vengence at the very end of the bus ride over to the west side highway.  i unbuttoned my shirt, and was scratching at at my stomach, and arms and legs like crazy.  it seems they have turned off the AC on the buses, or mbe just this one.  my body just flat out freaked on me.

i got to the studio, and couldn’t get the AC working.  went up to the kitchen looking for some ice; just the other day, the freezer was full of ice, but today it was empty save one sketchy looking 3 x 4 inch ice pack.  i rubbed it all over my arms and belly, only to discover it had frozen soda on it, or something.  so then i washed in the sink.  what a sticky mess.

it was weird storming around the lab trying to make the AC work, trying not to cry, trying to figure out how to get some food (i called for takeout, but no one was picking up their phone) and everyone was either on the phone or had their earphones on.  i wanted help, but i was embarrassed to ask for help b/c i didn’t want to have explain or something, and everyone was in “ignoring mode.”  it is my responsibility to ask, but sometimes you just want someone to notice you, and ask if you need help.  old-lady-on-the-bus syndrome.

so here i am in the server room.  my assistant is out standing in line at the sandwich shop getting food.

EL called right when i sat down in the server room, and i was breaking down and crying.  and he gave me a good talking to about how i can’t let myself freak out over external pressures.  my health is more important than anything anyone could ask of me to do.  No deadline is as important as my health.  Gosh… deadline == dead line.  um.  that’s morbid wordplay.  but maybe it will help me focus on not letting the deadlines takeover.

Its really hard.  I’ve started so many things that are in motion that are controlling my time.  I mean this book i’m working on, I started it over a year ago.  there are a bunch of things like that, which I can’t get out of, are already set in motion, and involved at least one other collaborator, if not a team of people.  and there are things like a printer deadline and the fact that the book is already up on amazon.  seeing the book on amazon really freaked me out.  that made the deadline real in this whole other way.

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.