I’m clear at two years, but my aunt died last night

I am officially clear at two years. I found out this past week. This morning I found out that my aunt passed away last night after four years fighting lung cancer. I was deeply relieved last week and deeply saddened today. And I will not be able to be at the funeral on Wednesday.

My full set of scans finally came back two weeks ago, and I just met with my oncologist.

He finally gave me some numbers: he has been unwilling to commit to numbers b/c they have so little data on my staging group. He said that the rate of reccurrance was anywhere from 15-30 pct during the first two years. (That range has changed several times, as it is a fairly broad range, and they don’t really have a handle on it.) More importantly, at two years, it now drops to 10% and after five years it drops to 5%.

10% is a nice number.

He said the scans looked really good. Which means very stable. nothing new. Everything has been consistent for two years. In particular he had been concerned about the nodules in my lungs which were ostensibly scars from my childhood pneumonia. He is now convinced that they are totally completely benign, as they have not changed *at all* in two years.  This is good.

I had a pretty rough time leading up to these kind-of high pressure scans. Scheduling the scans was an ordeal insurance-wise (they were reschedule once, and were almost cancelled the day of b/c the insurance papers had not come through.)

Then the New York Times published two articles on melanoma that appeared the night of my 2 year cancerversary. I had the scans done at that point, but had no results. They totally fucking freaked me out.


I was a wreck after i read the first one. and then the second one only made things worse. I was actually already on edge, as I waited for the results from my 2 year mark scans.

So I was already on edge, and then this article comes out talking about patients diagnosed with the same type of cancer as me, but who were diagnosed at extremely late stages, when they were more-or-less given weeks or a few months to live. A very few of them respond to this miracle drug, but after 6 months, they all relapse, and a large percentage die. Talk about fucking heartbreaking. I was doing my absolute best not to cry while reading the article. In retrospect, maybe I should have cried; maybe it would have released some tension? Who knows.

But I didn’t relapse. This is the major milestone. It is the first real number-changing mark. My numbers now go down from the vague 20 to 40 percent, to a solid 10 percent. Three more years, and I get to 5%. From what I understand, I will never get under that 5% — the percentages in a given year are very low now (whereas they were quite high in the first two years, especially in the months 12-18), but if you add that up over the rest of my life, it adds up. But it is a mark, and now I only have to see my doctors and get my scans at 6 month intervals, not 3 month intervals.

My Second Cancerversary

Today is my second Cancerversary.

I went to my Dermatologist for my check up, and I was cleared.

I am still waiting for the results from last Thursday’s scans, so I am not celebrating yet, but this is a big milestone… in the making. I made my next Dermatologist appointment, and had the pleasure of scheduling it for six months from now, a three month extension to the routine from the last two years.

I am very very hopeful, but not celebrating yet. I learned the hard way about counting chickens before they hatch. I will count them when the report comes in. I will also finish my mixed metaphor then as well.

Things falling apart

Broken iPod Touch

I just broke my iPod, and found out that my mileage accounts have been cleared out on a technicality, all within 60 minutes…

At first the iPod breaking didn’t phase me. Am I that meditative? Am I that drugged up?

It is just an object. There is no data lost. The screen is cracked, but I can still navigate and retrieve what little data is on there.

Then I started to feel bad. Defeated, or something. I sat down to make a plane ticket to Portland for July for my last month of IFN injection. O and I are going to PDX for a better climate for my last month of injections. If all goes well and I don’t have to have any breaks (cross my fingers) I will be done on Thursday July 23rd.

In two weeks, I will have four months before I go to Portland. Somehow going to Portland feels okay to substitute for ‘being finished’ even though there will be another three or four weeks of injection there.

I figured that I was flexible with dates, and I had a bunch of mileage to use, so I fumbled my way through the password retrieval process, only to find out that I had *no* miles. None. All cleared out. All 104,000 miles cleared out. On a technicality of a expiration policy that i was never told about. I did the same on my United mileage account, and same story, though no love lost there, as every flight I have taken with them has been miserable, and I don’t even know if I had enough for a full ticket (with the free ticket inflation these days.)

Expired Miles

Expired Miles

It all sucked really badly. I felt really defeated. And overwhelmed in the face of bureaucratic logistics… is it worth all the headache of calling customer service, trying to get through to a human, and then the physical and emotional trauma of having to play the cancer card. To tell them that I have not been able to fly, so my miles were zeroed out for inactivity, and now i need my miles to finish my drug treatment. I’m getting dysesthesia in my hands as I type this, just thinking about it.

The thing is what I am really afraid of is that something might happen like this on a bigger scale. What if the dollar were to tumble so drastically, my bank account might as well be filled with Rubles? What if the City of New York is so hard pressed in debt that they drop all untenured faculty. I’ve been seeing some of this happening: My 401K from school (which I look at once a year tops) has half as much in it as when I last looked. O just got a pseudo-rejection letter from an academic job search, saying that despite a full slate of excellent candidates, they have decided to terminate their search without hire — They don’t have any money. Job searches are being canceled halfway through. I am trying to get my work into a gallery right at the worst possible time in nearly two decades. And I might be buying an apartment in my building at a moment when buyers and sellers are at a standoff over prices, with buyers refusing to pay current prices, and sellers refusing to admit that their apartments are worth 20 percent less than they were last last year. Admittedly, if I do buy the apartment, it will be at a significant ‘insider’ discount as per the byzantine NYC condo conversion guidelines.

first they take the miles and make them disappear. then they take the dollars and turn them into rubles, and back again. I should rereread Master and the Marguerita soon

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.

Losing My Hair?


Interferon is not supposed to cause your hair to fall out the way that conventional Chemo does. The traditional chemo patient story is that one day, after the second or third treatment, all their hair on their entire body falls off in one day.

I had relatively little hair loss up until month two or three, when I started to notice excessive amounts of hair in the drain… *when I didn’t wash my hair!*

I also notice that if i undo a hair band, there is maybe 5x the amount of hair that would normally be there.

And I have noticed I can see my scalp. My hair is *thinning* which is what IFN is known to do.

I told my dad, and he jokingly reminded me that this was about when he started to go bald. But we have different mother’s fathers, and my mother’s father didn’t go bald (to my knowledge), so I have hope.

The Taste of Blood

It is 7:45 on Saturday morning, and I can’t get the taste of blood out of my mouth.  I had awful dreams last night, including a kid who had his classmates pee all over him, then set himself on fire (and died) all for a youtube video, my girlfriend calmly explaining that she had been sleeping with a 17 year old (but she had realized he wasn’t the one for her), and having to sit through an awful experimental noise music performance, and then blood.  Dreaming of blood.  Dreaming of drowning in blood.

I think that part of your brain that thinks “wait! this might be real!” kicked in.  It is the same one that kicks in when you are having a dream about peeing.  It kicked in, and i woke up coughing up blood.  It was dark in the room, but i could tell the darkness of the blood against the white tissue I rubbed against my mouth.

I have been having lesions in my nose for a couple of weeks.  They don’t heal, but they produce these hard angular scab crusts, which often dissolve when I neti.  It is raw and painful.  Hard to breath at times.  And quite noisy.

I spat out a lot of the blood into tissues, and held my nose where the blood was coming from.  The jagged scabs made it quite painful.  I filled five tissues with coughed up blood.  I ate cereal. And I still have the taste in my mouth.  I wonder how long I was bleeding before I woke up?

Calmly, I start my self-injection tomorrow

I start my self injection tomorrow.  Strangely i’m not nervous.  The last two times I started the drugs I was in a real panic.  The initial start had me panicking 2 weeks out.  I panicked for two days before the restart after I had to take a week off on a drug holiday.  But this time I am barely giving it a thought.  Maybe that means its denial.

The drugs have to be kept refrigerated. I have the drugs, and I have to keep them them cold on my trip up to Columbia Presbyterian.  I was looking around the house to find something to keep them insulated.  I thought of slipping it inside one of the ice pockets on my ice vest, but I’m afraid that it will actually freeze the drugs, which I have been told ruins them.  Or maybe it just breaks the needle.  So I settled on putting it into a metal coffee travel mug.  I was inspired by stories that I have been told of the pro cyclists around 10 years ago who were all doping, and were toting around their needles inside of metal water bottles.  Apparently the needles would clink back and forth making noise.  And everyone was doing it.  So everyone had a clinking metal water bottle.  So off I go tomorrow with my clinking coffee mug.

So much cancer today, so upset

Dinner tonight was HW and her husband JW and P’s parents BD and SD.  HW has an abdominal cancer.  I’m not really sure exactly where it is located.  I think it is ‘worse’ than mine, not that speaking about betterness or worseness has that much value, as it is all statistics, and it is all so random.  anyway, I think I was told once, but I forget.  or maybe i forgot.  as a coping method.

HW was my first grade teacher.  She is BD’s best friend, though BD lives in Napa now and doesn’t get to see her much. HW asked me how my week had been, and i made a hand motion for a wave that started low, got high, and ended low.  She said “We must remember to cherish the good moments.” One can never be too old to learn from their first grade teacher.

HW found out about her cancer at around the same time I did.  Maybe right before.  Maybe right after.  I can’t remember. (Or again, maybe I forgot as a coping mechanism — my memory has been so unreliable through all this.)  She was my first grade teacher.  It feels so strange to talk about Infusion procedures, and trade cancer stories with your first grade teacher.  It is both a testament to how amazing she is, and also how young I am.  Its one of the few kinds of things that make me say “this is not fair” and feel like crying.

She seems heroic.  like, more heroic than me.  I’m not sure why.  Maybe because she is more likely to die.  Or I am less likely to die.  I’m not sure which of those sentences is the right phrasing. Or maybe because she has lost her hair.

Sometimes I wish my treatments would make my hair go away.  People are constantly saying “you look so good” and I wish they understood how much I cry.  and how fucked up my body is inside.  and how hard this drug regimen is.  I wish there was some external marker.  I have two really big scars.  but one is in my groin, so not so easy to flash people (i’m actually grinning a little bit right now.).  The other is on my calf.  When I am riding on my bicycle, I actually imagine what it would look like from behind.  I wear it as a badge of courage.  It is the one visible marker.

Even though everyone keeps telling me how heroic i am being, or how gracefully i am handling this, maybe HW seems more heroic than me because she is just the only other person I actually *know* who is currently dealing with this.  There are other people I know who have gone through this.  And there are the kind-of anonymous people at the Infusion center, but I only know the first name of one of them.  The other Interferon woman who is the only other everyday person doesn’t even wave at me when she leaves at the end of the day.  I tried waving at her, but it was awkward; she didn’t really wave back, but kind of smiled.  She is middle aged, which is still young for the center.  Mostly very old people.

between my colleage and having HW over, there was a lot of cancer talk today.  all day.  it was hard.  i knew it would be hard, and i went for a bike ride beforehand.  i rode hard, and was winded.  i had a lack-of-oxygen-from-exercising ear ache.  it felt good.  and also it was a distancing tool.  i think.  i realize this in retrospect.

I was kind of nervous all day.  about seeing everyone.  i mean, i don’t see many people these days.  i kind of freaked out at the farmers market this morning because there were so many people.  And at dinner, I kind of wanted to just withdraw from the whole thing and go upstairs and cry or write email, or curl up in a ball, or something. but BD sat next to me the whole time and held my hand

I’m nervous about tomorrow.  but i think i should be able to sleep okay. i will take the regular klonopiin and ambien.  and listen to this new CD:

last night i went to sleep listening to this ‘visualization’ CD for stress.  i was too scared to listen to the cancer one.  the narrator repeatedly states that the best time to listen to the CD is right as you are going to bed, and that if you fall asleep while listening, that is very much okay.  so of course, i fell asleep almost immediately when she finished the introduciton.  so i think i’ll listen to that again tonight, and hopefully the anxiety and stress will go away, and i will sleep well

mom just came into my room to tell me i have a 9am appointment with the Naturopath.  I was really peaceful, and then the idea that I was going to have to get up so early, and go to see this guy just to ‘check in’ made me really angry.  and really ready to cry.  I stormed downstairs, drank three glasses of water, almost ate something just to eat something (not hungry) and came back upstairs, and rewrote this entire post to reflect how upset i am feeling right now.  how anxious i am, and how upset seeing HW made me.  upset at my own fear.  upset by my own fear.  oh, god, what a state to be in before bed.

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.


(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.