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.

Scarfs, Clothes and Memory

My godmother sent me her late husband’s scarf for my birthday.  Jack passed away several years ago; he had been waiting for, and then had a liver transplant that did not take.   i *do* remember Jack wearing it. I will wear the scarf with the strength and power and perseverance that Jack lived his life with.  it is both hugely emotional for me to receive this from her, and for her to give it.  and it is probably, in a certain way, cathartic.  memory is hard.  especially the sweet ones that we want to hold on to, but have to move on from.

i have a box that has three stuffed animals that my ex-girlfriend and I used to play with.  they all had names and characters, and histories and personalities. i don’t want to let go of those memories, but at the same time i can’t impose that on someone coming afterwards.  and those memories have turned so bittersweet.  (and not like all the chocolate i got for my birthday).  she is an *ex* for a reason, despite the funny scenarios she could concoct with two stuffed tigers and a dog.  maybe some day i will find someone to give them to, and show them their personalities and their voices. (they all have very distinct voices!)

My aunt sent me a scarf for my birthday last year.  She had begun knitting extensively when she started chemo for lung cancer.  The scarf arrived late, in mid january.  That was almost exactly the time I first went to the dermatologist to ask him to look at the bump on my calf.  It is amazing the power we can attach to clothing: sometimes I think of that scarf as her way of warning me.  Or of welcoming me.

Naturopath 2.0: goals and strategies

i got enough sleep before the meeting with the naturopath.

basically it was kind of like therapy.  except from a cancer survivor.  whose whole deal is finding ways to win the mental war and compensate for the nastiness of the physical war in the body.

he gave me B-12 vitamins.  b/c I don’t eat meat, which is mostly true.  (did you know that pescatarian was added to the dictionary today? So was Fanboy!!! — http://edition.cnn.com/2008/US/07/07/new.dictionary.words.ap/index.html)  and it will also help my liver function

and we talked a lot about goals and how i need to overcome this mentally.  it was a lot of information all at once. and it was just the same information as the last time, but more specific.  lets see if i can remember:

1. I personally have to take on the mental battle.  The drs are doing the chemical stuff, but I have to win the mental battle.

2. I need to set goals.  Part of the problem is that I am just reacting right now.  Reactionary.  I feel bad, I feel good.  I need to set short term and long term goals.  So I have something to aim for.  My long term goal is full quality of life during the 11 month treatment period.  My short term goal is to make it through the next week feeling good, with more energy, and more calmness.  And to have liver enzyme counts that allow me to finish up the drugs.

To accomplish the next week’s goal he told me I need to eat more (whatever I can eat, whenever I can eat), continue to exercise, take my B-12, and I forget the rest.  Oh, meditation.  Meditation.

I said to him that meditation seemed to work, but I didn’t understand why. And he said something that was kind of stunning, but I kind of forget what it was.  maybe it was kind of mystical like ‘maybe you know more than you realize.’

Anyway, it was really early in the morning, and it was so much information, but I forget.  The next meeting is after noon, so I’ll be in better shape.

The other thing he kept saying is that I have to move through this.  I can’t be passive.  I have to move through this, and arrive at a state where I am at peace with the cancer.  Because, as he says, I will never get to the point where the cancer is a non-issue.  He is 19 years out, and he still thinks about it.  As he says, this is now version 2.0 of my life.  And there is no going back.  But there is making peace.

And if there is no making peace, then I play victim.  And that is lame.  I don’t want to play victim.  Laaaame.

i think there was a bunch more, but that is what i remember now, two hours later.

now it is time to leave to get my Interferon.  week 3 begins.  hopefully this will go easy.  and my liver will stay happy.

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.

Hello World: Melanarrative

I am a 30 year old Brooklynite who was diagnosed with Stage III Melanoma in February 2008. Today, I was meditating through my second session of chemotherapy, and came to the conclusion I should be blogging all of this experience.  I have been sending emails out to my close friends, but it all forms a coherent narrative.  A Melanarrative, so to speak.  It all came to me.  Meditating to Brian Eno’s Music For Airports.

There have been a lot of changes in the last four months.  A lot.  Like meditating.  I only started that two weeks ago.  At the insistence of of the Psychiatrist when he proscribed me Klonopin. He told me how aggressive he was about treating things with drugs, but three times told me I needed to learn how to meditate.

I have been writing emails to my friends and family from the beginning.  I will continue to do that, and post much of that here.  I will also return to those emails and post them here as necessary.

I am a creative person who does things kind of like this blog for a practice, but I feel strongly that this remain an anonymous endeavor.  Some of you reading this know who I am.  I put my trust in you to keep it anonymous.  Not because I am ashamed of what has happened to me.  But because I do not want that to become *who* I am.  It is something I have.  And experience I have had.  But not *who* I am.

I am writing this because it is a way for me to work out my thoughts and feelings.  And maybe someone else out there will find it useful, or interesting, or similar, or different from their experience.

I am writing this because I have already forgotten what it felt like the day before I found out my diagnosis.  I am writing this to preserve my own memory.