Tag: interferon

becoming a melanoma expert

one of my colleagues called me today.  i talked to him for a while.  just chatting about the situation.  but also, an acquaintance/friend of his was just diagnosed with Stage III Melanoma (what I have).  but there are complications — something in the intestines that is (maybe) not the melanoma, it is something else.  he’s having blood in in his stool; i think it sounded like he had noticed something a while ago, but hadn’t gone until the blood showed up.  apparently the doctor said something like ‘i wish you had come six months ago.’

hearing that story makes me so glad i reacted in the way i did.  i swear, i wonder how long it would have been until i found it, if i hadn’t forgotten to trim my toenails, and if it wasn’t so dry in my apt in the winter, i wouldn’t have scratched the back of my dry dry calfs, and i wouldn’t have caught my toe on the lesion and yelped, and looked down to discover that new mole.

actually, i know when i would have seen it.  K saw it and asked what it was.  I told her i had gone to the dermatologist, and he said it was either a blood blister and going to go away in four weeks, or to come back to have it removed.  so it would have been maybe six weeks later.

my primary care physician (whom i totally have a crush on) called me when she found out (via doctors reports.)  she was pretty amazed/shocked herself.  she said “you know, you saved your own life by finding it and acting on it.” and she is not the kind of person to make exaggerations.

anyway, it was great to talk to my colleague today.  i enjoyed talking with him.  but it was a little weird being the melanoma expert.  i mean that is largely why he called.  he wanted to give his acquaintance/friend some info from my experience, and to get my doctor’s info.  its not something i really *want* to be an expert on.

also, it was a bit of pretend-normal.  talking to him, i got up for it.  i felt better talking to him.  i was concentrating.  using all my energy to be lively.  trying to be upbeat.  charming.  make jokes.  laugh at his jokes.  etc.  in the process i make it seems like i am doing better than i am.  partly b/c for that moment i *am* doing better.  but also b/c i don’t want to appear not well.  it is, to a certain degree, about appearances.

pretend-normal.  tomorrow i restart the Interferon.  back to life in the slow lane.  no appetite, no energy, no motivation.  i have been really anxious.  i took extra anxiety medication this morning.  i don’t know if it helped.  i rode my bicycle hard.  i think that helped.  i was breathing really hard; the kind where you get a headache in your ears.  that is such a sign that you are working out hard.  i have not worked out that hard in four months?  it sure feels good.  though who knows when i’ll be able to do it again.

130 tomorrow is bloodwork.  hopefully i pass, and get the drugs.

anticipatory despondency (sp?)

ive been totally despondent all day.  i have no energy, and no appetite.  its like i’ve already restarted the Interferon.  Like this is some kind of psychosomatic preview.  I have shuffled around the house trying to figure out what i can bare eating.

i cried hard today.  for the first time in a long time.

i realized that i’ve been here in portland for a month.  time just slips by when you are sick.  such a strange thing.  i’ve never experienced this until the last 6 months.  Its been six months!  half a year already.  that is so amazing.  so awful (& awe-ful.)

writing it down helps get it out and away.

my parents dont know what to do w/ me.  they keep suggesting these things to do.  go to Multnomah Falls.  go for a bike ride.  go for a walk.  but i feel so awful.  i know that getting out and doing something will probably make me feel better.  but the thought of it also makes me totally revolted.  what a mess

its going to suck again, but i can’t wait for the Interferon on monday, so i can just get this over with

my mom brought me some chicken soup, which seems to be the only thing i can eat when i get like this.  mom’s homemade chicken soup.  so cliche.  but it works.  feeling a little bit better.

i can’t wait to be done with this and back in my normal life.

ADDENDUM

(photo CC-BY-SA from Flickr by 80sAustin)

I spent an hour+ meditating, which helped.  I don’t really understand why it works, but it does.  It calms me down.  Gives me a structure to feel my emotions, cry where needed, etc.

Then, as per O’s suggestion (re: my observation) I took the novelty approach, and walked somewhere I had never walked before.  Kind of.  I walked down the Marquam Trail towards downtown.  We used to walk down this trail when I was little, and I used to run it in high school, but I haven’t walked it in at least 10 years.  The trees were so huge…  It was amazing to be in the woods right in the middle of the city.  I grew up in it, but I clearly had forgotten.  It is nothing like Central or Prospect park, which are so manicured.  And also so full of people.  I didn’t see anyone the whole time.  Though I heard a little brook gurgle.  And lots of birds.

When i got to the bottom, I called my mother for a ride back up the hill.

Walking down was hard, physically.  Which was emotionally invigorating.  But also broke me down enough that I had to stop several times to cry.  I wonder if I am reverting to the state I was in when I first found out and all I did was cry.  I would sit down on the subway, and just start crying.  I hope not.  At least I can cound on the Interferon to blunt all emotion.   I know, I know, that is a totally fucked up concept.

A brief return to un-drugged-ness

my liver function was too high, so i am not getting drugs this week.  this was a kind of a let down.  (i am drinking a detox tea to help my liver get ready for its test on monday)

the unexpected silver lining is that i get to feel normal again for the week.

i have an appetite, some energy, and my sense of humor back.

up to this point, i have had absolutely zero appetite, been sleeping 14-16hrs a day, and yawning constantly.  and kind of emotionally ‘flat.’  not that much pizzaz, shall we say. (which is to say, dull and emotionless…)

i started to feel it on tuesday, but it took until wednesday for my appetite to really come back.  around dinnertime i told my mom that i wanted to go out for dinner.  like, i wanted to go out somewhere nice, joking that i only had another five days of enjoying food, before the drugs started again.  she laughed and asked where, and I mentioned this one restaurant Higgins that I had never been to.  turns out they had a gift certificate that had been sitting around for a year, and she made reservations.

i also went for a bike ride with my dad.  just three miles around the fairmount loop.

and i drove the car over to my friend KT’s studio.  first car driving this trip, which is the same as saying first car driving since last thanksgiving (9 months?).  At thanksgiving I scraped the front end of my dad’s car in a parking garage.

Liver Function Too High

over here, i had a small setback.  my liver function test was too high. Last week it was 160, this week it was 317, “normal” is 10-40, but on Interferon it is kosher to go up to 200.  so they gave me the IV for the fluid, but are holding me for a week for the Interferon.  i have to wait a week then if my liver function is back in the acceptable range i will continue.  i have been told this is is quite common.  so i’m not worried.  i was hoping that i would be done sooner than later, but that is hopefully all this means.

stopping in the middle or modifying in some way is more normal than not.  my understanding is that it does not compromise effectiveness.  and when i made my ticket, they made me budget in an extra week “in case.”

So now the weird thing is that I am maybe going to feel okay this week.  I say maybe, b/c who knows, as my weekends were worse than my weeks.  That said, I do feel better this evening than I have for a while.

Sadly, it will probably make going back next Monday even harder.

What’s in a word OR Eating the Cancer

Yesterday I went to a Naturopathic Doctor who works at the Complementary Medicine center at the Cancer hospital I’m getting treatment at.  My mother pushed for it.  I didn’t really care, though felt like I should do my due dilligence.  My father was not consulted.

There are a few strong memories I have about my father when I was young, especially discussing medicine.

My favorite was when my father was drinking a coca-cola while driving, and in all earnestness I told him not to drink and drive.  I really thought that was what all those advertisements were telling me.  He thought that was a hoot.  I’m smiling writing this.

I also remember asking him what a “shrink” was, and he explained that a psychologist was someone who talked to people about their emotions, that a psychiatrist was someone who went to medical school and proscribed drugs for people, and a psychoanalyst was for people who believed in some out of fashion ideas that someone named Freud believed in.  He didn’t tell me what those ideas were, for fear I would kill him and run off w/ mom (LOL); I didn’t hear about them until we read Oedipus Tyrannos in 9th grade and our teacher had to explain to our dumbfounded class of 15 year olds that this Freud guy really did think everyone wanted to off their dad to get their mom.  And some other stuff…

Anyway, the real story here is when I asked him what a Naturopath was.  Or maybe I asked what a Chiropractor was.  Either way, the answer was pretty definitive: A Dentist is someone who did not get into Medical School, a Podiatrist is someone who did not get into Dental Schoool, a Chiropractor is someone who did not get into Podiatry school, and a Naturopath…  don’t get me started.  It was something like that.  So typical of an MD.  To be fair, I think my father has mellowed out a little bit about these issues over the past 20 years, but he is still an MD.

So we went to see the Naturopath yesterday morning.  His only availability was at 8:30.  One of the first things he said was “you look shell shocked.”  True, true.  He was kind of funny, and personable.  He asked me to give him the history of my cancer.  Then he told me about his experience with cancer: he was a 32 year old filmmaker and he was diagnosed with testicular cancer.  His experience beating cancer and dealing with the MD world inspired him to go back and become a Naturopathic Doctor to help people make it through cancer treatment.

He gave me a couple of supplements: some “pro-biotic” that replaces all the good stuff in my digestive tract that the drugs remove, so I can have “good poops” as he said. (grinning.)  And he gave me some flower essence drops that supposedly help reduce anxiety.

But what he really gave me were a couple of ideas.  Pointing at his head, he said “Its all up here.  Either you eat the Cancer or it eats you.”  He said several variations of that idea.

What really made it click was when he said “You know, if it makes it easier for you to think about it this way, Interferon isn’t really chemo; it is an immune system stimulant.  It works on completely different principles.”

So here we were again, back at the is it or isn’t it chemo.  But this time I found that thinking of it as NOT chemo made it something I could digest and move on.  I’ve been feeling better since then; emotionally and physically.  Maybe it is just that point in the treatment where I have built up enough tolerance for the drug that I can deal.  Maybe I am beginning to learn how to eat the cancer.

Chemo day 6

Chemo today was easy.  And i’m doing okay w/ side effects.  (None so far besides fatigue)  I didn’t get as tired as I have been.  Many yawns, but that is it.  I find that eating helps me stay awake, and I have found a few things I can reliably eat.  Salad, pasta salad, water, bread.

I’m getting good at showing up, getting plugged in, and then falling asleep while the IV fluids and Interferon drip into me.  It does not scare me anymore.

They drew my blood and did the tests on it.  My liver function is high, and my white blood cells are low, but this is expected.  I’ve got 20% more to go before they have to cut the dose.  But my immune system is close to being compromised.  They used the word Neutropenic (http://en.wikipedia.org/wiki/Neutropenia).  I’m not there yet, but that is the risk.

I kind of have a little crush on the nurse that does my chemo.  Not a real crush.  More like a nurse crush.  Like a “You just stuck a needle in my arm” crush.  Its tiny, and by saying it, I either risk killing it all together, or getting it blown out of proportion!  LOL.

Chemo day 5, end of week 1

I made it through the first week.

I’m tired, and feverish, and really irritable.  My Parents are trying to figure out what I want, and how to help me, and how to make me happier, but I just want to be left alone.  I tell them that, but they aren’t listening.

Of course, I could not make it through this without them.  At all.  But I also wish I had some more distance.  I need to process this stuff in my head, and I need quiet and alone time.  And my mom is being Jewish-mother on me.  Super well intentioned, but won’t leave me alone sometimes.

I went through a big debate about whether to come home.  I grew up here, but I don’t live in Portland, I live in Brooklyn.  But Brooklyn is loud, and my hospital (Columbia Presbyterian) is all the way at the north end of Manhattan.  And my aparment is tiny.  And it is so hot in the summer.  As I put it in an email:

April 29, 2008

i start the interferon drug treatment roughly June 1st.  i’m trying to decide whether i should stay in nyc for this, or go back to portland.  i get a high dose IV for 1 month, followed by 11 months of self administered low dose.  toxicity is high, and hits hardest in the first two weeks.  not sure whether it would be better to be around friends, my brother, and my mom (who would come out), though with a harder time of getting to the hospital, or to be with my parents, their dogs, and one or two friends in portland, though with easier access to the hospital.  i also feel like being able to go into the studio if only for a few hours, a few days a week, will have grounding effect on me -  its because of the people in the lab more than the actual working (i can do that from home, or from portland.) also the airplane flight will be hard, and is not recommended post-surgery b/c of swelling issues.  i’m honestly torn, and unsure.  though i have some time to figure that out.

But I decided to go home:

May 24th, 2008

i made the decision to go to PDX to have the Interferon.  the range of reactions to the drug vary from 4 weeks of 103 degree fever, to a bad fever for the first two weeks.  it is hard to not know which will happen, but i would rather be in PDX feeling better than I thought, than alone here in NYC with a 103 degree fever for four weeks. and if i do have 4 weeks of high fever, i would def rather be surrounded by quiet, trees, dogs and parents.

the dr in PDX is going to accept my insurance’s out of network pay rate.  i have substantial out of network deductible, which sucks,  but after that, they’ll clear it all fine. it is worth it to be in portland, i think.

My trip to PDX was delayed because the incision is healing slower than expected.  It is quite long, and they had to go quite deep, and it is right at the crease of my leg, so it is agitated every time i move my hip joint.  fun…

i have a plane ticket leaving June 9th, returning July 19th.  my first appointment is june 11th.  that is a wednesday.  i don’t think i will be getting the Interferon that day.  i might start later that week, or i may start that monday.  not sure, and prob wont know until i have that first meeting.

I guess it has been so long since I have spent more than a week with them that I underestimated the parental factor.  I did have some terms (in the next post), but I forgot how my parents can be. It reminds me of when I went on a trip with my father to visit colleges in New England.  After every campus tour, or class visit he would ask me what I thought.  And I would say something like “I don’t know,” which really meant “I don’t know yet because I’m still thinking about it.”  But I hadn’t learned that about myself yet.  But he kept asking.  And at some point I cracked and I think I yelled at him, and then didn’t say anything for 24hrs, or something.  Maybe he got the point, but i doubt it: its not like I was the best communicator then.  I think he was pretty pissed too: flying me across the country and driving me around, and I wouldn’t even tell him what I thought of these things?  The problem was *I* didn’t know what I thought of them.  I had to process.  I needed time to understand my experience.  Same here, kinda.

First day chemo report

my aunt (who has been doing chemo for two years for lung cancer) told me to “visualize building walls”

i went into this part of the hospital where they have a lot of big kinda-comfy chairs, they hook me up w/ an IV and put in 1 litre of saline solution. towards the end of that, they piggy-back on the Interferon.  all told it takes about 3 hours. a lot of time

then i went home and waited for “it” to hit, whatever “it” was going to be. “it” ended up being headache, and really feverish joint aches.  followed by chills, and then a nasty fever w/ sweats. it totally sucked around midnight – chills alternating w/ fever – sweated out my bed.  but i feel today just kind of hungover.  supposedly the chills drop off and the fatigue builds over time.

today’s thinking: i can do this

when i went in i did the breathing meditation i was working on w/ my massage/healer person.  i did it to brian eno’s music for airports, which is probably my ‘desert island album.’  it is nothing but perfectly syncopated arrhythmical tape loops of pianos and other synths.  and so calming.  though some people cant stand it.

then i switched to the first half of the jack kornfield meditation for beginners cds that a fam friend gave me.  i did the breathing meditation.  and mindfulness.  and then right when it ended and he rang a bell and i opened my eyes, the nurse was approaching to talk to me.  timing = perfect.

she stopped by to tell me about the chemo drugs.  the interferon.  its interesting.  in nyc they never used the word chemo.  here they only use the word chemo.  i can’t tell if it is some kind of technical/chemical differentiation, or a philosophical/emotional diff.  like the nyc’ers are all about denial and pretending it isn’t what it is.  and pdx is all about just calling it what it is.  but isn’t that a flip for what i would expect?

she kept telling me how expensive the drugs were.  each daily dosage is $9,000.  insurance covers it.  but $9K.  crazy.

yesterday, about 3 hrs before i went in, something clicked.  and all of a sudden i had no more anxiety.  all of a sudden it was ‘game on’.   like i felt 3hrs before a big soccer match, or a ski race.  i was prepared, calm, collected, and ready to kick ass.  i was walking on the balls of my feet w/ a spring in my step.  bring it on.

i used to be a competitive ski racer (in college.)  skin-tight downhill suit. helmets.  and very very fast descents down icy icy steep slopes.  i was pretty good.  i never won anything but considering i was racing against ppl who were ex-world cup racers and ex-olympians (25 year old romanians and czech olympians who came to obscure US colleges on skiing scholarships), it is understandable why i never won… LOL.

ski race pr0n attached below.  this is mbe 10 yrs old.  someone sent it to me about two weeks ago. first pic i have ever had of my skiing, really.  many were taken, but none got to me.  here it is 10 yrs later…  its hard to tell b/c the shutter speed was so high, but i was prob doing about 45mph at that moment.

off i go for day two.  it will be at 230 every day, for the next four weeks.

m