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

Intron A / Interferon Unboxing!

So the geeks out there know about unboxing. When you get a new cool gadget, and you think you are the first to get it, you photograph or video your opening the box to show everyone how cool the gadget is (and therefore how cool you are.)  Someone actually called it “Geek Porn,” but I think that is best applied to other things.

I have uploaded the full size images, b/c there are no good images on the Internet of what this thing looks like.  Believe me, I tried looking.

So here is my Intron A Interferon unboxing.  These are the needles for Subcutaneous (Sub-Q) self-injection.

I picked it up at my local drug store.  It has to be kept refridgerated, so it was in a brown paper bag that said REFRIDGERATE UPON ARRIVAL.   In red.  Allcaps.  Pretty intense.

(Of note, that sticker was made in Redmond, OR, a town which I have not thought about in probably 15 years, and a town which is now probably just a suburb of Bend…)

Inside the bag were two boxes of Intron A.  The prescription was for 4 units, and the tag on the bag said 3 units, but I only got 2!  And this stuff is *not* cheap.  I have to go back and ask for my third box.

Inside the box is one preloaded needle, with 60 MIU of Interferon.  Supposedly it is a little overfilled, so there is actually 70 MIU in there. As you turn the handle it increases the dosage.  One full turn is 5 MIU, Two full turns is 10 MIU.  Each notch on the turn is one MIU. The pink part at the right functions as the plunger/button.

This is the end that the needle screws on to.  Looks like there is some kind of membrane that the needle goes through. Something resealable or something.

And it comes with a batch of screw on needles in their own little individual double walled containers.

Intron Interferon Self Injection Pen

On monday I go up to Columbia to learn how to use it.  I think I have a pretty good idea, and it comes with instructions, but it will be good to have a professional needle-person walk me through the first time.

Day 20: Done Done Done

I finished my high dose IV Interferon today.  It was emotionally great.  Now I’m trying to finish packing my bags.  My parents have been doing most of it.  I’m at the threshold of tears because it seems so overwhelming.  And I’m just trying to pack my carry on.  Its 11am and I have a 6am flight.

I know I’m really happy to be done, but right now I feel so tired.

Its going to be a long day getting back in NYC.

Day 15: Week 3 done

That’s about the most important thing today.  Week three is done.  And I kicked its ass.

I’m pretty tired right now, but a lot of that has to do with all of the excitement from my many visitors, and all of the exciting things we have done.

The pizza party was awesome.  Our hike was really aggressive.  All the way from the bottom of the marquam trail to Council Crest (elevation 1,100 ft), and then back down to my parents house on Sherwood (elevation 600ft).

And today we went out for really nice dinner.  P picked it.

I was freaking out on the way there.  Just an exhaustion/hunger/panic episode.  Tired, and claustrophic in the car.  Everyone was loud and boisterous, and my mom was getting lost, and driving erratically.  I was crying quietly for the last 5 minutes.  And when we finally got there, i just got out of the car at a stop sign, saying “i need to get out”  and walked into an empty field/lot.  I sat down and cried and then meditated.  And then did childs pose.  It calmed me down a bit.

I had to go out again towards the end of dinner because I was so tired I was getting to the point where I couldn’t take it.  So I went out there and did a little sit.  P sat with me for a little bit.  It was nice.  The sun was setting right into our closed eyes.

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.

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.

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.