Self Injection Day 1: I learned how to shoot up!

The calm surrounding restarting the drugs evaporated about two hours before I had to head up there.  I started getting headachey and overheated.  I tried everything to make it go away (eating, drinking, pain killer.) it wouldn’t go away b/c it was psychosomatic.  This was happening a bit in PDX. My Dr there explained to me that it was a very well documented phenomenon that chemo/interferon patients get psychosomatic symptoms *before* they go to actually get the drug.  So chemo patients will start puking in the morning before they go to the hospital for chemo.  In my case, I got headaches, feverish and even more tired in the hour before I was going to leave for infusion.

My appointment was for 5pm.  I got there 15mins early.  But when I arrived at the office, it was like an episode from the twilight zone.  All the receptionists were different, they didn’t know the nurse practitioner I was there to see, they didn’t my Dr’s Physician’s Assistant, and they didn’t even know my doctors phone number. Apparently this office is used by different doctors each day.  Rather than have one set of receptionists and assistants, each doctor has their own set of receptionists and assistants.  I guess they just sit in a cubicle the rest of the time answering calls and scheduling appointments.

So I call up to the receptionist who is in her cubicle, and she says that she will page the nurse and send her down.  15 minutes later I call back, but it is 5:02 and the call goes straight to the message system.  The twilight zone receptionist leaves.  Doctors leave with their bags. You can see where this is going.  Knocking on doors I found someone who knew what I was talking about and who i was looking for.  He made some calls, and actually spoke to her: there was an emergency in the chemo clinic, but she would be down as soon as she could get there.  

About an hour passed.  I was starting to get more psychosomatically symptomatic.  Plus I was getting tired and hungry.  Right when I was really ready to walk out the door I decided to try the open-the-book-when-waiting-for-the-bus technique.  Right when you give up on the bus coming quickly, sit down and open up your book to read, the bus inevitably shows up before you finish the first page.  Its like Law of Nature.  So I announce that to S, who doesn’t quite get me, and I go turn on one of the computers in the waiting room.  They have two public computers to keep people from getting too bored.  And sure enough, right as the first little windows flag shows up in the boot cycle, the door opens and the nurse walks in.

After all that waiting, the injection was really easy.  I’m glad I got instruction, b/c I would have screwed some things up.  I would have pushed the needle in too far.  And not done it at the correct angle.  As is, I didn’t really do it at the right angle.

Pushing the needle in is painless.  As in, I couldn’t actually feel the needle enter my skin.  It was weird that way.  Injecting the IFN stung a bit.  I had to do it slowly.  I did the first half, then I did the rest.

After I did the injection I had this 5 minute spurt of energy, optimism, and other kinds of good feelings.  It was partly b/c it was over, and it was soooo much easier than I thought it would be.  But it was also probably partly chemical. I’m sure there were a lot of endorphins, or adrenaline or whatever that my brain pumped out when my brain groked that i *really* was about to stick a needle in me.  It was so weird to be looking down and think “I’m going to stick this needle into my stomach…”  and then to do exactly that.

Train ride sucked, but not that bad.  I got the headaches for real right as we turned the corner to the apt.  I got some chills, but not that bad.  I should transition to a mild fever shortly.  But overall, not so bad.  Not as bad as restarting.  Which is interesting because I am at the same dose that I was at for the second two weeks of IV, I just take it 3 times per week, rather than 5 times.  I guess the body doesn’t absorb as much when the IFN isn’t mainlined into the vein.

Calmly, I start my self-injection tomorrow

I start my self injection tomorrow.  Strangely i’m not nervous.  The last two times I started the drugs I was in a real panic.  The initial start had me panicking 2 weeks out.  I panicked for two days before the restart after I had to take a week off on a drug holiday.  But this time I am barely giving it a thought.  Maybe that means its denial.

The drugs have to be kept refrigerated. I have the drugs, and I have to keep them them cold on my trip up to Columbia Presbyterian.  I was looking around the house to find something to keep them insulated.  I thought of slipping it inside one of the ice pockets on my ice vest, but I’m afraid that it will actually freeze the drugs, which I have been told ruins them.  Or maybe it just breaks the needle.  So I settled on putting it into a metal coffee travel mug.  I was inspired by stories that I have been told of the pro cyclists around 10 years ago who were all doping, and were toting around their needles inside of metal water bottles.  Apparently the needles would clink back and forth making noise.  And everyone was doing it.  So everyone had a clinking metal water bottle.  So off I go tomorrow with my clinking coffee mug.

Verdict: Ice Vest Rules!

The ice vest totally worked.  I feel better than I have felt since I returned to NYC, even though I had a full day.

I wore it for 3 hrs running errands in the morning and in in to the studio.  Refroze the ice packs (though I don’t think they fully froze b/c they were stacked on top of each other…). Then I wore it to meet BH for lemonade, ride the subway to chinatown, get a massage, and then eat dinner.  After about 4 hours, all the umph was gone from the packs, so I took it off for the last ride home.

Frankly, I think everyone who gets overheated should be wearing one of these during the summer here.

Yay!

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.

Sleepy Undertow

I went up to the hospital today.  I had an ultrasound to verify the presence of my veins and blood flow in them.  My Dr did this experimental procedure that I’m not really supposed to talk about.  And this was part of his documentation process.

And I also saw my Psychiatrist, who it turns out has been following the blog.  It was pretty amazing to talk about something, and have him reference something else I had written down in here.  To complete the self referentiality, we might talk this shout out when I see him in two weeks.

I went in to the studio for a bit, then came home and totally crashed.  I got up at 7:30 to make it to my 10am ultrasound.  By the time I returned home at 5pm I was totally spent.  I had a couple of errands to run, and I was getting ready to leave to take care of them when I realized I had a migrane level headache, and was slurring my words.  leaving my to do list and packed bag of things to drop off or mail off, I kind of collapsed onto my bed.

I have taken to napping since I was diagnosed.  I have observed that a short rest-without-sleep will revive me when I get sluggish or dizzy or just plain tired.  BUT, a sleeping nap is more likely to screw things up more.  So going down for a nap is always a precarious thing.  This time the undertow was so strong, I had no power to avoid it.  I lied down on the bed, and really felt pulled down into sleep.  I woke up some time later, and stumbled into the bathroom to take a Tylenol 3 with Codeine, and stumble back into bed.  I finally woke at 10pm.  It was one of those sleeps where my teeth hurt when i woke, and I was really unsure whether I felt better or worse after it all.

The slow lane

in high school i liked to drive cars really fast.  when i came home from college and i was not used to driving, i learned to enjoy going slow.  really slow.  sometimes i would go extra slow to piss of people behind me who seemed like they were in too much of a rush.  now, i am learning to enjoy walking slow.  because i am often stuck walking slowly home from the subway.

today i was walking home from the subway and there was another (young) woman who was walking as slow as i was.  there were several awkward moments where i was about to pass her, then she was about to pass me.  we were very conscious of each other, b/c we we were both walking *so* slow.  i couldn’t take it anymore, and i walked even slower, and let her move ahead.

Managing the side effects, managing the heat

S and i went to the coop yesterday.  it was EPIC.  an official record: $346.24. it was so hard(core), I almost started crying towards the end.  we got three watermelons! (watermelon is the only thing i can consistently eat everytime.)  i was totally exhausted.  i just sat down in front of the CLIF bars and tried really hard to breathe.  i was actually, kind-of, meditating in the Park Slope Food Co-op. Really.  S sat down next to me.  and we just sat for a minute or so.  while the craziness of the co-op went on around us.

today & yesterday I am doing better.  maybe it was because I didn’t try to work yesterday.  i stayed home and read in bed. (and went to the coop.)  also, it was much cooler today.  the weather has been kicking my ass so bad.  it is the worst that the NY summer can offer.  by the time I made it to the studio I was a wilted flower.

i think i can feel the good effects of coming off the drugs, but its hard to tell because the weather has also been better in the last few days, and i have pushed myself less.

That was complicated, let me try that again: When I got back to NYC the weather was so hot and humid, and my symptoms from the Interferon correspond quite perfectly to how I feel in hot and humid weather, so I was really unsure how much of what I was feeling was drugs and how much was the NYC weather.

Reality Check (first day back)

I went in to the studio today.  I was around for a little over 4 hours.  Mostly checking in with people, saying hi, writing email etc.  Between the work effort and the viciously hot-and-humid commute, it was too much.  I came home at 5PM and passed out soon after.  Its 9:30PM and I just woke up.  I’m groggy and basically need to go back to bed.