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.

day 12, a meditation question

The drugs were fine today.  I mean, I felt like shit, but it was okay.  I am not going to let it keep me down.  I had headache and chills and fever when I got home.  Not as much of a spike as the first day restarting, but I felt worse longer.

Last night I had a meditation conundrum.  I realized I might be doing it wrong.  I was using music to block out the sound.

so I asked three meditation-minded friends a question:

can you listen to music?  what do you do when your environment is really loud?

i know you are supposed to do it silently.  and i had just listened to one guided meditation by gil fronsdal where he says explicitly that it is not allowed, and that it is a crutch.  his reasons make sense.  but he lives somewhere in marin county.  you could hear cars driving by every three or four minutes, but that was the only sound.  plus he’s an expert, and i’m a beginner, and I need this for my health.  it may be a crutch, but people with broken legs use a crutch until their leg is strong enough, no?

when I do it at the infusion center at the hospital i use early ambient brian eno to block out the noise.  which is about as close as you can come to listening to white noise.  the center is loud, with phones ringing and machines beeping, and all kinds of old folks gabbing away and trading war stories about their chemo?

or also thinking about when i go back to nyc, and the apartment is so loud.  just the apartment.  people upstairs, people in hallway, friggin loud refridgerator.  i dont expect that will be anywhere near as bad as the hospital, and yet being able to do it at the hospital is crucial for my calm.

I asked three people.  My massage/healer/counselor person, HT who is a verifiable Tibettan Buddist (proving her street cred by flying across the country to hear one of the holy men speak), and SL who whispered something about learning to meditate across the studio table very early after my diagnosis (with his trademark crafty one-sided raised eyebrow.)

My massage person said that yes, it was a crutch, but because I was not using the music for entertainment, but for more of a white noise effect, it was okay for now.  The most important thing was that I was getting what I needed from the meditation.  That the music is familiar to me, and therefore comforting; part of the problem with the the infusion center is that it is scary, so the comforting effect may help me be more mindful.  (we spent more time talking today, than we did massaging.  that is def what i needed today.)

SL is hardcore (as usual), while acknoweldging that rules are always meant to be broken (also as usual).  He wrote:

I use earplugs sometimes.  There’s also something called sound meditation where you try to hear every sound but not focus on any of them.  Or something like that.  I have only *heard* about it. har har.

This might be helpful?  I haven’t heard it myself…

http://www.buddhanet.net/audio-meditation.htm

Mindfulness of sound and thought, firstly instructs on how to use sound as an object of meditation then asks the listener to shift attention to thoughts. The second part of this track is more instruction on how to manage difficult thoughts when they arise rather than a guided meditation.

But the thing to remember is that the noise out there is just like the noise of your thoughts. They’re just gonna be there. Always. And what you’re learning is how to get past the noise (noisy thoughts or audio noise) and let it go. A busy room is tricky, but it’s a great place to practice!

Also, do what you gotta do.  The rules aren’t rules.

HT is a softy, though wise. She wrote:

of course.

and no, you are not supposed to do it silently. at least, it’s not the only way. that’s only a part of it. and there are totally all kinds of different ways to meditate.

yes, the music is a crutch, but i think it is important to identify what it is aiding. it’s aiding you to stay calm, which at this time i imagine is very important in getting through your treatments.

in the future, when you have a little bit more ‘space’ (the japanese word is ‘yoyuu’…can’t quite describe it but maybe S would have a better word), when you’re back in nyc etc. i imagine that would be a situation in which you could develop your ‘meditation’ further- which from what i have learned so far is about trying to be in the present, looking at oneself, and it is a way in which we can develop our mind as a muscle- our mind to stay calm amidst all the chatter of thoughts, desires, insecurities, the sound of cars, apartments etc.

So I went halfway.  I listened to the guided meditation tape, but I turned up the volume so that the hiss of the recording noise and the MP3 compression noise was loud enough to just dull the sounds around me.  I could hear talking, but I couldn’t understand the words.  That was enough.  I just need to get through these next two weeks.

I did get a chance this evening to meditate “in silence.”  Right before dark I walked up the Marquam trail to Fairmount, a steep uphill 15 minute hike.  When I got to the top I sat on a rock and waited for my dad to come pick me up and take me back down.

It was dark by then, and not many cars were driving by.  It is true, what SL said.  Its all noise.  Even the swishing of the branches of the trees, the rustling of the leaves, and the scurring of the squirrels are noise that you have to block out to concentrate.  I could see the lights of each car through my eyelds, and I spent most of my time resisting the urge to look and see if the car that was approaching was going to stop for me.  As it turns out I was distracted by most of the cars that passed, but not my father’s car when he arrived.  Maybe he turned out his lights?  Maybe he was just going slow enough that the engine was mostly silent.  His arrival and my opening my eyes was very peaceful.

Then I got rather feverish on the ride back down(!)

UPDATE: SL points out that I got my facts wrong, and that it is easy to be a hater:

Also, Gil Fronsdal is in Redwood City – which is why you hear the cars going by in his talks.  Kornfield is in this totally remote part of Marin County or Fairfax or something.  Where it is almost totally silent except for the trees and everything else.

What’s funny is when I’ve been to Spirit Rock (the remote location) people will come in late and they make noise and you just *hate* them.  Even though you’re not supposed to.  “what the fuck just sit down already”  Then you gotta work with the noise AND the fact that you’ve turned this person you’ve never even seen into the worst person in the world.

I’ve heard about long retreats where people fall asleep and start snoring.  Or my friend Annie was on a silent retreat (no speaking for days) where someone’s watch alarm went off every hour or something and they never thought to turn it off.  When you’re not speaking to anyone it’s really easy to turn that person into the worst person in the world in your mind.

Sleeping potion

this is the guided imagery meditation i do right as i am going to sleep, which is “an especially powerful time” according to Belleruth.

Belleruth Naparstek’s Meditations to Relieve Stress

It’s kind of supercheese.  But it totally works:

i haven’t made it past the first five minutes

i fall asleep each time

that’s the idea, of course. she says so. in my ear.

i have one about Cancer, but i have been kind of scared of it.  but i will try it out soon.

Interferon reboot: day 11 or day one again

It wasn’t as bad as the first day for sure, but I did have the chills/fever pattern. I was so worried about my liver function being low enough, I didn’t take any preventative Tylenol (as I had been the first two weeks), so I immediately felt the effects even as I was getting up from the infusion chair. And definitely on the way home in the car.

When I got home I took some Tylenol and Advil, and crawled into bed with all the covers and the heating pad. My muscles were on the threshold of contracting and doing the chills/shake thing that Bob told me about. But I didn’t go into shakes. I hugged the heating pad around my chest, slept off the chill for an hour and a half, and woke up sweating with a mild fever feeling. And hungry.

Following my Naturopath’s advice, I ate a lot, exercised a bit (15 minute walk), and am about to go meditate. I feel much more in control mentally. And, of course, I am control minded, shall we say. (Appending the work “freak” just seems unsavory in this context…)

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.

becoming a melanoma expert

one of my colleagues called me today.  i talked to him for a while.  just chatting about the situation.  but also, an acquaintance/friend of his was just diagnosed with Stage III Melanoma (what I have).  but there are complications — something in the intestines that is (maybe) not the melanoma, it is something else.  he’s having blood in in his stool; i think it sounded like he had noticed something a while ago, but hadn’t gone until the blood showed up.  apparently the doctor said something like ‘i wish you had come six months ago.’

hearing that story makes me so glad i reacted in the way i did.  i swear, i wonder how long it would have been until i found it, if i hadn’t forgotten to trim my toenails, and if it wasn’t so dry in my apt in the winter, i wouldn’t have scratched the back of my dry dry calfs, and i wouldn’t have caught my toe on the lesion and yelped, and looked down to discover that new mole.

actually, i know when i would have seen it.  K saw it and asked what it was.  I told her i had gone to the dermatologist, and he said it was either a blood blister and going to go away in four weeks, or to come back to have it removed.  so it would have been maybe six weeks later.

my primary care physician (whom i totally have a crush on) called me when she found out (via doctors reports.)  she was pretty amazed/shocked herself.  she said “you know, you saved your own life by finding it and acting on it.” and she is not the kind of person to make exaggerations.

anyway, it was great to talk to my colleague today.  i enjoyed talking with him.  but it was a little weird being the melanoma expert.  i mean that is largely why he called.  he wanted to give his acquaintance/friend some info from my experience, and to get my doctor’s info.  its not something i really *want* to be an expert on.

also, it was a bit of pretend-normal.  talking to him, i got up for it.  i felt better talking to him.  i was concentrating.  using all my energy to be lively.  trying to be upbeat.  charming.  make jokes.  laugh at his jokes.  etc.  in the process i make it seems like i am doing better than i am.  partly b/c for that moment i *am* doing better.  but also b/c i don’t want to appear not well.  it is, to a certain degree, about appearances.

pretend-normal.  tomorrow i restart the Interferon.  back to life in the slow lane.  no appetite, no energy, no motivation.  i have been really anxious.  i took extra anxiety medication this morning.  i don’t know if it helped.  i rode my bicycle hard.  i think that helped.  i was breathing really hard; the kind where you get a headache in your ears.  that is such a sign that you are working out hard.  i have not worked out that hard in four months?  it sure feels good.  though who knows when i’ll be able to do it again.

130 tomorrow is bloodwork.  hopefully i pass, and get the drugs.

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.

ADDENDUM

(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.

A brief return to un-drugged-ness

my liver function was too high, so i am not getting drugs this week.  this was a kind of a let down.  (i am drinking a detox tea to help my liver get ready for its test on monday)

the unexpected silver lining is that i get to feel normal again for the week.

i have an appetite, some energy, and my sense of humor back.

up to this point, i have had absolutely zero appetite, been sleeping 14-16hrs a day, and yawning constantly.  and kind of emotionally ‘flat.’  not that much pizzaz, shall we say. (which is to say, dull and emotionless…)

i started to feel it on tuesday, but it took until wednesday for my appetite to really come back.  around dinnertime i told my mom that i wanted to go out for dinner.  like, i wanted to go out somewhere nice, joking that i only had another five days of enjoying food, before the drugs started again.  she laughed and asked where, and I mentioned this one restaurant Higgins that I had never been to.  turns out they had a gift certificate that had been sitting around for a year, and she made reservations.

i also went for a bike ride with my dad.  just three miles around the fairmount loop.

and i drove the car over to my friend KT’s studio.  first car driving this trip, which is the same as saying first car driving since last thanksgiving (9 months?).  At thanksgiving I scraped the front end of my dad’s car in a parking garage.