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.

One week out

Its been a week since I started to feel better. 10 days since my last injection. The Sunday after my last injection felt like any normal Sunday, but Monday I woke up and felt amazingly better. My joints didn’t ache. I didn’t have to take Tylenol and wait for 30 minutes before I could get out of bed. And I felt like I had a lot more energy.

Unfortunately, the next four days was the second hottest heat wave on record in portland, tying the 4 days above 100 in 1981. It peaked at 107. Considering that my side effects are mostly heat triggered, it was a brutal four days. I really don’t know if I could have made it through it if it happened a week earlier. O and I retreated from the house we were staying in, to my parents house that has AC.

The daily improvement is subtle and hard to gauge. I know I’m getting better, but I also know that I am not well yet. My eyes healed first: no more flaky skin all over my eyelids. The open wound on my ankle immediately started to form a proper scab after 2 months(?) of being an oozing semi-open wound. My mouth has healed enough that I can brush my teeth with my finger, and tomorrow I am going to get a new toothbrush and try to brush them for real (I haven’t done that for 6 months!!! ICK, right?). My dysesthesia is down a little bit, but b/c i have eased off on the Atarax, and it is so hot, it is somewhat hard to tell how much better it is getting. I am much more mentally clear. My dad said it was like I came out of a fog. The heat here is hard, and it will probably be worse when I get back to NYC at least until mid september.

Last night my parents had a bunch of family friends over for dessert and drinks. It was a chance for them to see me and talk to me, and for me to thank them for supporting my parents over the last 18 months; most of them hadn’t seen me for a while: at least since I was in Portland last summer for my initial high-dose treatment.

It was Os first time meeting my parents friends. If you grow up far away from your extended family, your family friends (aka your parents friends) become like family. They have a major role in shaping who you are. They provide models for how to live your life.

So as I said, it was Os first time meeting them, and afterward she remarked how great they were. How caring. And interesting. I said that everyone who came had an open heart.

I made a toast to my Parents, O, S, PD, and all of the people who helped support my parents over this long haul. It was long, and full of honest, clear spoken, sentimental truths.

I told them about getting a flat tire two days ago in a borrowed car. Once I realized there was a problem, I panicked, then calmed myself. Before I knew it the guy who lived in the house we were stopped in front of was coming down his stairs to help. His name was Jared, he was 230, mostly muscle, and wore a National Jiu Jitsu championship t-shirt. He (with a little bit of help from me) used all his strength with his arms, a hammer, and eventually his whole weight (while I held the tire iron onto the nut) to get the nuts off. The car is a ’89 Land Cruiser, when they still were real safari vehicles, and not suburban tanks. It was a beast. it took 40 minutes to change the tire, and by the end his body was literally dripping with sweat. I profusely thanked Jared (we are going to drop off a bottle of wine and some cheese and crackers tmrw).

I told him that this would never have happened in NYC. You have a crisis: its your problem. No one else stops to help. The only space where people really seem to help each other is on the bicycle: if any cyclist is off their bike and still in the road in Prospect Park every cyclist that comes by stops to make sure you are okay. Even the meanest rider in the park, whom PD and I dubbed “The Bully” (who laughed at me when I rode around with my shirt pulled up to cool my belly) stopped when I had a dysesthesia attack on my bike. My bike was on the ground, I was clutching my ribs in a half bent position, shaking a little bit. Trying to calm myself so I could ride up the last hill and go home. He and his gang stopped to see if I was okay. I clumsily tried to explain that I was in chemo and that i get these really painful pins and needles. That it was kind of like a little seizure, but that it would pass. He said that he recently lost his father to cancer, and he expressed sympathy and understanding about how difficult the fight is. After reassuring them that I would be okay, they rode off. That is the only time a stranger has stopped to see if I was okay, or to help.

The other thing I said was something PD’s father SD said to me sometime in between my surgeries and my IFN year started. He said that he has been repeatedly told by friends who had been diagnosed that their lives took on more meaning after their diagnosis. I told SD that I had just come to a similar realization: that knowing that I could die shocked me into realizing that every moment is precious (what an awful cliche…) and that I really should be doing what I really want to do.

Less than 24 hrs

My last injection is in 21 hours.

I shouldn’t feel the side effects lift for at least 24 to 48 hours after the injection, but today felt a lot easier than the previous few weeks. I woke up feeling good, I had a kind-of-big meeting during the day (I haven’t had a meeting in weeks, if not months). Maybe I just had a good day.

But I feel how close the end is. That sounds super cliche and kind of sentimental. But I think that my mind has taken over, and knows it is going to be released from this cycle of… (think of non-cliche word for pain and suffering and fail…) …pain and suffering and it is kicking in the endorphins, or whatever, to get me through the last tiny little bit.

Tomorrow we are going to have a few people over for pizza, i’m going to do my last injection, and then we are going to pop some champagne to celebrate.

I am going to go to sleep, and wake up to the rest of my life. That sounds cliche, and maybe even ominous, but I’ve been waiting for this for 18 months now.

A Big Ass Fortune Cookie

I rec’d a pkg from “Lady Fortunes” and while I do buy a lot of stuff online, and often forget exactly what was coming from where, most everything I’ve been buying have been art materials that have been shipped back to NYC.

So this package shows up with the return address “Lady Fortunes.” It was addressed to me, but I felt like it might have been a mistake. I waited for O to wake up, and ask her if it was hers. It seemed like tike it could be private. She denied all knowledge, but exhibited great curiosity. Ditto with my mom.

I was baffled. I had no idea what it was. We unboxed it, and it got funnier and funnier. So it is a fortune cookie that is 9 inches wide… and we are in hysterics. But there was no card in the box. So we are guessing who it is from. We suspected AW and LK, but it turns out upon opening, that it was from my Aunt and Uncle.

We were on a giggle-high from that one. So awesome.

Massive Fortune

Massive Fortune

Massive Fortune

Durer postcards and the crazies

My mom has been sending me postcards from a durer collection as a countdown. The postcards are from when I was born. Or something like that. She has been putting pressed flowers on the back of them. I’m down to half way through the fourth to last week.

I’m starting to exhibit some really startling side effects. Violence in my sleep. Talking in my sleep, and saying things that are *not nice*. It is really crazy to be out of control of my basic non-craziness.






Mom sends flowers

Graham Thomas

Peter Mayle

Just Joey

Gertrude Jekyll

Jude the Obscure

Jude the Obscure, Gertrude Jekyll, Just Joey, Peter Mayle, and Graham Thomas hopefully will still be performing when you arrive. If not, there are lilies in the wings.
5 more weeks

mom & dad

My mom has been sending pictures and postcards every week during this last countdown. Here are this weeks five roses. I might have gotten the wrong names on the wrong flowers.