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 Mom on Hair

My mom wrote me back about the hair…

when I was on the prednisone for 2 yrs, my favorite barrette , that I had had since college, fell out of my hair in the ocean in Hawaii.  That’s when I knew I wasn’t imagining that there was a considerable change.  Didn’t get it all back, but most.  Drugs play alot of hardball on your body.  Fortunately, you have some to spare, in the hair dept, and it is not apparent  to the familiar eye.

Dad ran into Dr U last week, and he said all the side effects will be gone when you are done with the treatment.  That is something to look forward to.

that, and your Grandpa Morrie did not loose his hair, nor did his brother Saul

I remember when she lost that barrette.  I didn’t understand what the big deal was then.  I get it now.

Another mole removed

I guess these are technically biopsies.  This is the second one post Melanoma diagnosis.  The first one was expected negative.  The dermatologist removed it because it was on the back of my leg and hard for me to track it.

My mother saw this one, and thought it was new.  I have no idea.  The dermatologist thought it looked healthy, but we removed it anyway.  Its the mom-principle.

one more biopsy

Inteferon Dreams

I restarted my IFN last night.  My mom arrived yesterday.  This is actually a coincidence.  But it was really nice to have her here while I tried to pretend i wasn’t nervous.  I can’t quite tell whether i was actually calm, or was in denail.  previously it was clearly denial, w/ a lot of pacing.  but today, after a week of meditating, and my mom’s comforting and distracting presence, i think i might actually have been somewhere in the middle.  close enough to the middle, that I don’t know.

I just woke up.  Its 7:30AM.  I have a headache.  I had the usual chills, though less fever than normal. woke at 4:30, and only kind of slept after that.

Clearly my unconscious was churning through the implications of restarting the IFN.  I had a series of dreams about IFN, science, and weakness.  One I only remember as me on a mountain bike, trying to climb a hill, and getting passed and yelled at: this is about the bully who rides in Prospect Park, and who yelled at me last time i rode there.  I remember one about camping with my mother in snow (she has car camped w/ me once or twice tops.)  But the best one was another naked school dream.

I was in the audience at the front of a lecture hall listening to a lecture on the immune system.  It was a young female professor.  She went through all of the obvious functions of the immune system, the lymph nodes, whats in blood, red blood cells, white blood cells, platelets, and some other stuff that i remember from my many bloodwork results (billyrubin, leukocytes, neutraphil, etc).  Then she talked about Interferons, which stimulate neutrophil?  I forget.  I was repeating the pseudo-high school science lesson i’ve gotten over the course of this process.  Things I never really knew.

Then the lecture happened again, except this time it was a song i knew.  But only kindof.  I was singing along to the lyrics to comfort myself, b/c at the same time it was the song, it was also the same immune system lecture.  The young co-eds to my left and right were indignant — I mean, I am tone deaf, and didn’t know half of the lyrics to whatever song it was.  One of them (on the left) said, “do you actually know this song?” in a tone that made it clear she was really saying “shut up asshole.”  When she got to the part about Inteferons, and the side effects of Interferon therapy, and listed them all, and talked about how hard it was, i said out loud “I have that.”  And I started crying.

At that moment, the class was dismissed, and the co-eds kind of dissappeared, but kind of registered their surprise and also disgust/fear of me. I get up, and realize that i’m only wearing a t-shirt.  chest is covered, but the choice bits are poking out the bottom (LOL).  as per usual with naked dreams, i’m not that embarrassed, just concerned about the difficulties it sets up.  I try to get out of the lecture hall, which actually is surrounded by an airport like structure, with big pillars, and caverns, but no gates or planes.

Somehow I realize that I’m supposed to teach the same class for the third time around.  I hear “well, if your such an expert, why don’t you just teach the class.”  I try to escape via the caverns in the edges of the building, while someone comes in singing with a choir from the entrance door, and makes their way to the dias at the front of the room.  They are singing an a capella motown/gospel song; all i could make out was the refrain: “Here comes the Doctor.  Here comes the Doctor.”

I escape to the outside (maybe i magically get pants, maybe not, i can’t remember.) The young co-ed on my right comes up to me on the path away from the big building and touches me with a big rolled up sheet of paper.  She offers it to me.  I open it.  It is that 2 foot by 3 foot size of paper that comes in pads and is used in classrooms in lieu of a chalkboard/whiteboard.  There are words on it written in in black whiteboard marker.  I don’t remember what it said.

I’m hungry now.  I’m starting to get some fever action.  Going to eat cereal and lie back down.

My brother is on a plane to San Dieigo

And I am now here by myself.

Before I went to sleep, we raised a toast with the leftover champagne from his Sunday party.  I had less than half a glass, but on top of the other drugs I am on, I was nearly immediately woozy.  I slept harder than I have in months.  I woke up in the middle of the night to turn off the fans, and walked into more than one wall or piece of furniture.  Very deep, heavily drugged sleep.

Today is the first transitional day to Fall.  Its not Fall yet, but it isn’t Summer anymore.  Last night I didn’t have to run the AC, and I even turned off the fans in the middle of the night and put on the duvet.

So this morning it is twice as quiet.  No S, no whirring air.

I woke up from a dream in which I was crying.  I was crying in the dream. I don’t think I was crying physically, though I woke up with all the emotions of crying.  The dream was an extended “I forgot to wear my clothes” dream.  As a teacher, these dreams happen to me.  Once I actually forgot my clothes, but that is a whole other story.  Usually I am not worried about being naked — I worry about the other people made uncomfortable by my nakedness. but this time I was worried, even though I did have underwear.

In the dream I got into an argument with my father about underwear — this make no sense, b/c it was a dream, but I think I was borrowing someone’s iPhone to watch a youtube video about underwear, and my father got angry because I he had ironed my underwear, and that was not enough, i had to go look at underwear too!  This, of course, makes no sense because my father doesn’t ever do my laundry, and i have never in my life had ironed underwear.  That might be fun.

Somehow we were all outside, surrounding a school bus.  I was in the bus.  Everyone was outside.  I cursed angrily and threw my housekeys at the front window, which made a small chip or crack in the window, and walked out of the bus.  The outside turned into the tightest bend in the street that I grew up on, and I started walking through tall grass in the direction of my parents house.  Crying.  I was in front, but I could feel the presence of my brother walking with me, to my left and a pace behind me.  Some other people, who might have been friends or might have been relatives broke off from the group and started walking behind me.  I was still crying in the dream.  Then I woke up.

I have a habit of having the most obvious dreams.  Really unsubtle…

On top of all this, I think I’m getting sick again

The good news is that I have started meditating again.  I’m going to a class w/ O.  Its Yoga, not the kind I did before.  But close enough.

A point of clarification, or becoming the little brother

It has come to my attention that some of my less-than-careful posting about ex gf’s has made me look like a typical dude who can’t take care of his own shit, and needs a woman to take care of him.  It was put to me in more delicate, and less annoyingly heteronormative terms.

The posts in question are here and here.  It would take way too long, so I’m not going to try to defend or explain.  I will say that they are stories completely without a context.  And that in most all relationships I have been in, I am always the caretaker.  I will admit to a mamma’s-boy binge here and there (going back to Portland for the Interferon and being taken care of,) but I am so much more my mother, than a mamma’s boy.  I am a total Jewish Mother, feeding, and caring for, and supporting, and making sure people go to the doctor, and nagging them when they don’t. I specialize in force feedings, nagging and guilt trips.

And by force feedings, I mean the kind where someone is coming off of food poisoning, or a really bad night out, and has not drank water for a while, and has not eaten for even longer.  I am a specialist at coaxing them into drinking some water, then switching to juice, and then to a smoothie, and then to toast, and then my job is done.  Don’t ask why I have such experience at this.  Again, the story would take way to long.  Let’s just say something vague like “past experience” or “history” or “my mother taught me well.”

So one of the most interesting challenges of the last *six months* (!) has been learning how to accept help, and ask for help.

I have always been a Jewish Mother of a big brother.  Well, not always.  For a while we fought terribly – I was an expert in verbal taunting, and I was still bigger and stronger than him.  I am no longer bigger and stronger *and* he practices Taekwondo, though I am probably still a better verbal taunter, though he is a very very close second.  After I left Middle School and grew out of that phase, I have always looked after my brother in one form or another.  For a while it was a burden my parents gave me.  Or rather, they begged me to take on.  Because he pretty much refused to listen to them for a while there.  I resisted for a while, and then it was just the way it was.  We both gave in to our parents’ wills. School help, life help, help dealing with our parents, etc.  I have even (and repeatedly) offered to make an appointment and pay for a proper hair cut; each time he turns me down.

The amazing thing about the last six months is that I have become the little brother.  My brother is taking care of me, taking me to drs appointments, telling me what to do, bossing me around, nagging me about things I need to take care of.  He is the dominant personality in a conversation, or situation more often than he would have been in the past.  And he is doing the grocery shopping.

When we were all home, there were moments when x and KM and LK and P could glimpse moments of my childhood.  In the way my dad showed them around the woodshop in the garage, or the way we would interact around the dinner table, or whatever.  One time S and I and my Dad were debating something; I forget the details, but Stephen was coming out on top and was teasing me about it.  So x called one out, saying “I just caught a vision of your childhood.”  I told her “Yes, but in the version from our childhood, I was S and S was me.”

And now he is leaving.  Leaving for the west coast to start a PhD.  I will miss him.  A lot.

Saying “I Love You”

Since the diagnosis i feel like i have an increased capacity to love people, and for people to love me.  or, put another way, i’m more likely to tell people i love them, and they to tell me.  people whom i very close to (but never said it), but also people whom this ordeal brought me closer to.

I don’t think it is the fear that i might not get the chance to say it b/c i might die, but rather that the possibility that i may die spurs me to do things I really wanted to do anyway.  its not that the diagnosis has me backed into a corner, but rather that it has become an opportunity to take advantage of.

I guess I became much more comfortable with the idea of loving platonically in the last few years.  I’m not sure when it happened, but it did.  I became much more comfortable with saying it, even to my parents.  I mean, of course, I love my parents, but I think that in the last few years something changed about the way I related to the phrase that allowed me to really mean it.  Or to recognize that emotion as love, though a different kind of love than romantic love.

So I got more used to saying it, and the idea of it.

Correspondingly, my cancer caused my friends to tell me they loved me.  I could speculate on causes: that it was the fear that I might die and they might never be able to tell me, or that the *realness* of the cancer allowed them to break out of their fear, or soomething else equally speculative.  But I will simply say that it has happened, and it is comforting.

Somehow Saturdays are so hard

I don’t quite understand, but Saturdays are the hardest day of the week.  I make it through a whole week of infusions with high energy and good spirits, and then Saturday I crash hard.  Same as the previous weeks.  I sleep in way too late.  Have no energy.  Cry for no reason.  Can’t eat.  No fun.

Today the plan was to go to the beach.  Really, it was my brother’s plan.  To take KM to the Oregon coast, and to let one of the dogs play in the wet and.  I was the limiting factor.  He kept asking me if i was ready yet.  I was still in my bathrobe.  I knew that we were going to be getting there really late.  I felt pressure.  And then I started crying.  I didn’t want to hold them back, but I aslo wanted to go.  I also didnt want to go, but I didn’t want to give up and not go.  Oh, what a jumble in my head.

I did go.  It was worth it.  The wind was strong.  The ocean was big. The dog was really happy. I slept on the way there and the way back.

x left this morning (no beach), P left to be with his girlfriend’s family last night, and KM leaves tomorrow morning at some really early time.  LK and I are going to hang out on Monday, but other than that, my friends have returned home.  I am, of course, a little bit sad from that.  But I also know that I have all my friends in NYC when I return.  Seven days.

I’m feeling really stifled by my family right now.  I know they don’t mean to.  But it happens. I’m really looking forward to going back to my regular life.

That said, I’m scared to have to take responsibility for so much of what my mother has been helping me with.  From helping me figure out what I could possibly eat, to making it, to doing my laundry, to supporting me emotionally.  NYC/Brooklyn is going to be a culture shock.  It is going to be hard again.  And there are going to be lots of people.