Non-Compliance

Doctors place a lot of importance on whether a patient is compliant or not.  Compliant means doing what they ask, taking your meds at the right time, following procedures, being a good little girl.   I see a lot of anguished posts over at KevinMD by doctors trying to reconcile how best to handle non-compliant patients.

I admit that for the most part, and against my natural instincts, I've been a compliant patient.  I've never missed a single appointment, whether for chemo, herceptin or a blood draw.  I might have taken an extra pain pill if I wasn't getting relief (how can you not?), but even with that, I don't take more than my daily allowance.  I take all antibiotics to the end of the bottle.   I understand the importance of my doctor's request in relation to my health, and so I do the unpleasant thing now for the goal of living longer in the future.

Until the other day.

My white cell counts are again very low.  This chemo, easy as it is on my capacity for functioning, is hard on my blood-making abilities.  So, as instructed, Thursday after work I injected myself with the evil drug Leukine.

I have taken Leukine several times over the course of this disease.  The first time, I had horrendous side effects.    Subsequent injections just gave me flu-like symptoms and so I figured I'd had a first-time reaction. I don't like the drug, and wish I didn't have to take it, but since the side effects have been milder than the first time, I have done it without complaint.

As, I did last Thursday.

That evening, a couple hours after my Leukine injection, as I was watching TV with the family, I started feeling sick.  My muscles started twitching in weird places, and my bones started to ache.  I started to feel nauseated and heartburn scorched my windpipe. I decided I'd go to bed early since I had to work the next day.

As I lay in bed,  I could feel the Leukine forcing my body to begin shoveling out white blood cells.  My bone marrow was like a guy pumping iron with weights far heavier than  normal: every vein was showing, sweat gleaming, that strained look of clenched teeth and wild eyes on its marrow face,  muscles tearing everywhere.

My bone marrow was young Arnold on steroids, not weak-willed, flabby, governator Arnold.

Apparently, my body first likes to make white cells starting from the base of my neck because that area became excruciatingly painful, and of course, gave me a severe migraine.

I got up (still able to do that) and gave myself an imtrex injection.  Slight relief in the head, I realized my body also likes to pump out white cells from the hips, my lower back, my legs.    I was sweating and nauseated and in pain from the effort of my marrow, so I continued to reach for my nightstand pharmacopia.   I took some ativan for nausea and sleep, a pain pill, and a tagamet for heartburn. Then I just tossed and turned, my body a bag of pain, feeling oh, so sick.

So sick.

I really can't describe how sick this drug made me feel.

I had difficulty moving, tied up in blankets I didn't have the energy to escape from,  and as I lay there, I hoped this wasn't what my end would be like. Pure misery.

Hours later, my bed smelled sour, I smelled sour from sweat and pain.  I didn't care.

My alarm went off at 5:45 a.m. and I knew I wasn't going to get up for work.   My iphone by my bed, I sent a text to a coworker "Won't make it in am.  Will try later.  Major pain I can't control yet."

That was an understatement.  At the time though, I was under the delusional thought I might be able to get up in a couple of hours and go to work.  I was hoping I'd feel better soon.  It was schedule pickup for sophomores, and I was needed.    Headache pain being the worst, I took another imitrex shot and I took an imitrex pill also, in the hope relief would last.

No such luck.  I spent the day in agony, sometimes sleeping, sometimes not, always hurting, in and out of a dreamlike state of illness mixed with pain.  Out my bedroom window, eyes slits, I could see a sunny, green day, hear birds chirping, lawnmowers firing, all so far outside my reach I might have been on a different planet.

There was no willing myself to get up and enjoy the day, there was no willing myself to get up at all.  I was trapped in bed by a body that would not cooperate.  I couldn't even pick up a book, or turn on a radio.  I was just a suffering bag of marrow-pumping meat.

The worst part, as I lay there, was I knew I had to do this again.  At 6:30 pm, I would have to inject myself with Leukine again, and start this all over again.  And, (confused about what day it was) I knew that the next day was a day of work I couldn't miss - hundreds of freshman would be showing up, bright, eager and confused, and I needed to be there to help.

I had to be at work.  But, I also had to take the drug that was keeping me from functioning at even a minimal level.

How could I?

How could I not?

6:00 pm, and I finally dragged myself out of bed.  I peed, grabbed some water, and hit the couch.

I was going to take my Leukine, I really was.

But, I couldn't bring myself to do it.

I became a non-compliant patient.  I know my body needs to to fend off the germs of 500 freshman and their parents, (or really - my own internal bacteria - I hadn't brushed my teeth in 24 hours) but I couldn't put myself through that pain and illness two days in a row.

I'm not even sure it would be good for my body to go through that again.

So, I didn't.

The good news was that I was confused about what day it was.  I had been sick through Friday and had until Monday to recover.

So, I waited.  I skipped Friday night's dose.

Saturday night, and Sunday night, I did give myself more Leukine.

But, I cut my dose by half.

I have no idea if it'll work at that dose.   I have no idea if I'll be risking myself being around 500 kids on Monday.   I have no idea why most of the time I don't have problems with Leukine -  but sometimes I do.  And when I do, the problems are unimaginable.

But, what I do know is I can never experience that again.

I will bring this up with my oncologist.

I've said it before and I'll say it again:

I loathe Leukine.

But now, I have a full-fledged Leukine phobia.