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.

Verdict: Ice Vest Rules!

The ice vest totally worked.  I feel better than I have felt since I returned to NYC, even though I had a full day.

I wore it for 3 hrs running errands in the morning and in in to the studio.  Refroze the ice packs (though I don’t think they fully froze b/c they were stacked on top of each other…). Then I wore it to meet BH for lemonade, ride the subway to chinatown, get a massage, and then eat dinner.  After about 4 hours, all the umph was gone from the packs, so I took it off for the last ride home.

Frankly, I think everyone who gets overheated should be wearing one of these during the summer here.


My New Ice Vest: I’m kinda like an Olympic Athlete

The hardest part right now is the heat.  And the worst is walking to the subway, and waiting on the platform.  The commute wipes me out so bad.  At some point this week I had a flash of an idea: an Ice Vest.  P had told me about them being used by elite distance runners before the race, and I saw the riders in the Tour De France warming up with them on.  The athlete idea is that you warm your legs up, but keep your core temp down (extending endurance performance by 21%).  My idea is that I will not overheat, extending performance by huge physical and thus emotional leaps and bounds.

The vest is made by StaCool.  I wore it this morning for about three hours.  On the way to my psychologists, during the session, on my way back, around the house, and then on the commute to the studio.  It kept me cool the whole time.  By the end, between the melting of the ice packs and the pressure of my backpack on the vest, the back bottom of my shirt got pretty wet.  Maybe related to the pressure of the pack.  Maybe just what happens after 3 hours.  Anyway, it kept me cool.  It worked.  I love it.

Me on the subway this morning, with my new ice vest.

StaCool Ice Vest

A studio photograph of the same vest looking a bit cooler than mine:

David Millar warming up in an Ice Vest.

Nike’s new PreCool vest, to debut at the Beijing Olympics

Day 19: Are we there yet?

Almost done.  Almost done.  Almost done.

Today was the penultimate day.  I should have geeked out yesterday and called it the antepenultimate day.  Oh, this is what my English Literature degree comes to.

Yesterday, the antepenultimate day, I overheard one of the nurses arranging for hospice care for a patient with pancreatic cancer.  She used the word “nonresectable” which I think means it is inoperable.  My grandmother died from pancreatic cancer.  Hearing the word “hospice” was scary, but also reminded me how well I am doing.  How healthy I feel.  How far I am from giving in and going under.

Today I gave all the nurses cookies (that my brother made) and the URL to this blog.  I gave it to my massage/healer person too.  While it was happening, I wanted it to be private from them, but now that I am leaving, I want them to see it.  Ah… control.

I’m starting to feel like I’m already transitioning back to NYC.  I made a haircut appointment (my hair is wildly out of control.)  And I made an appointment with my NYC oncologist so I can learn how to do the self injection pen.

Wait, did you catch that… my NYC oncologist.  I’m so bi-coastal I have two oncologists…  LOL.

day 14: EPIC pizza party

i’m having a pizza party!

and then we’re going to have a big hike

so many people are coming, i don’t even know how many

like 8 people, or something.  and that’s not counting my parents

i had 4 ppl w/ me for infusion today.

we spent a lot of time trying to figure out whether it was a posse, a crew, or an entourage…!

and my brother comes in late tonight

its pretty cool

Day 13, the happiest I’ve been

I’m the happiest I’ve been in half a year.  For a number of reasons.  The advice/counseling I got from the Naturopath on Monday has really helped.  It is a mental game, and as long as I stay tough mentally and take care of my body, I am doing much better.

It helps that they also reduced my dose after the break I took because my liver function was too elevated it.  They dropped it from 20 MIU/m2 to 13.3 MIU/m2.  I learned about what the whole MIU/m2 thing is too.  They give me my dose based on the surface area of my body(!)   So, for every square meter of surface area, I am now getting 13.3 Million Units of the Interferon drug.  I am getting 28MIU, so I guess I have a surface area of 2.10 m2.  I guess they calculate that from my BMI.

And then when I got home from my physical therapy & yoga my former roommate and best friend P was sitting on the deck chatting with my mom! He came as a surprise visit.  It was awesome.  I was on a high.  He took me to get my infusion.

Then we went on a hike on the Marquam trail.  It was at dusk.  Beautiful.  And it was for 45 minutes, and we were walking really fast.  I sweated a lot.  I think it was the most exercise I have had since February.  So we got to the top of council crest, and waited for one of my parents to come pick us up.

As we were sitting there waiting for a car that should have been there sooner than it was arriving to figures in profile come walking directly towards us.  One of them is walking very intently, and the profile looks really familiar.  And I realize it is my dearest friend x from LA, and then i realize the other person is my best friend from LA KM.  And i was so shocked, and amazed, and confused, and elated.  I turned to P and asked him something like “what they hell is going on?” and he said “oh, I was just the decoy” and I threw him to the ground with a yell of happy betrayal.  And then I tackled x to the ground in a hug, rolling around in the grass.  And then got up and tackled KM to the ground and rolled around.  And then got up and was so happy.

My brother comes tomorrow night.  And my dear friend LK is coming up from Santa Cruz in a totally separate plan.  I thought it was going to be a good weekend because I was going to have one friend in.  Now I have 4 plus my brother!  Amazing!

i am the happiest I have been in half a year.

note: this is the first post I have tagged “happy.”  Its a new tag.