Sunday, August 14, 2011

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.

16 comments:

  1. I had neupogen - which worked for me and had no side effects. I just tried to do a little on-line research on why leukine would be prescribed over neupogen but couldn't find anything. Both are colony stimulating factors, intended to increase production of abc. Maybe you could switch.

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  2. Hi Ann: If this comes out double, forgive me. I must have erased something. Sometimes non-compliance is a good thing. I am a retired RN, so please let me first apologize for your miserable experiences with some of those in my profession. I've always hoped my patients were better because I was there......I really cared about them. Anyway, about the non-compliance. I believe if I had complied when I was in treatment, I would have been harmed. When I was diagnosed with Stage 2 breast cancer in 2008, my treatment regimen was CMF, dose dense (every two weeks.)
    After the first shot of Neulasta, maybe l0 days later and with a wild sore throat, the injection site filled up with large hives. I took a photo of it and called the ER at Sloan-Kettering, but, because I had no other symptoms, didn't go in and went instead to my younger daughter's 30th birthday party. Ok. Came time for my next chemo appt, the oncologist said I couldn't have Neulasta anymore but still wanted me to do dose dense. On their own webside it clearly states that without Neulasta CMF should never be given dose dense. She was not happy whaen I shared this with her. I was shaking and crying and didn't know what to do and she left me like that, in the hall, insisting that she's just "pop me in the hospital" if I got an infection and that 'I was strong and could take it."
    My heart knew that dosage was wrong. I found another oncologist at another hospital and left, mid-treatmen. How very non compliant of me. The new onc agreed totally and said it would not have been in my best interest to have agreed. The other onc called me and apologized for her behavior. Sometimes these drugs are not one size fits all, you know?
    Sometimes our bodies tell us what to do by how they feel.
    I do hope you have a better time, perhaps your onc might go along with a lower dose. You are in charge, even though it might not feel like it sometimes. Ann, thank you very much for this blog. You share your soul in it and it it very helpful to so many. And it is so great to read about other women who hate the pink campaign as much as I do.
    Sending good thoughts your way. Take care. efmnana@gmail.com

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  3. I'm pretty sure the reason one is prescribed over the other... Insurance. (my biggest adversary)

    I'm so sorry you had to go through that, Ann. Sounds positively AWFUL!!

    The freshman kiddos will cheer you! But you must talk to your oncologist about this... you should get an alternative drug to boost your white count!

    Hugs!!!
    gayle

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  4. I had one shot of Neulasta that knocked me down big time. I had a three shots of morphine migraine. It was so awful, and lasted nearly three days. I told the doctor that I could not go through another episode like that. Neupogen worked for me. Instead of one shot, I had to take five of them, one a day for five days (eventually learned to give them to myself). There were no major side effects.

    I'm noncompliant as well, I guess. I never thought of it. They want me to experiment with different 'pain cocktails' to control the pain. I can't. I haven't got time. I'm a student. I'm an employee. I drive every day. Still, it was a shock to hear the doctor refer to me as 'resistant' to her suggestions. I'm not trying to be oppositional. I'm trying to find something that fits with my own life. I cannot take a semester off to find a combination that works. I'd lose my placement.

    It's gotten to the point that I don't care what they think. I've got to make the decisions that are in my own (and my family's) best interests.

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  5. I'm sorry you are going through this. There are alternatives to Leukine.

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  6. Leukine sounds like hell on earth, I'm so sorry. Neulasta has been horrific, but nothing like what you described. :o( Hope your onc will give you an alternative!

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  7. I hope you get some relief soon, Ann.

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  8. Thanks for all your comments. Especially yours, "e". My chemo nurses have been wonderful, but I confess to now having a hospital nurse phobia due to the negligent care I got after my mastectomy that I wrote about.

    I like nurses as a profession though! I appreciate all the advice everybody has given me. I know I have to be done with leukine or at least make sure the dose is adjusted. It's odd because it doesn't happen every time. But, it can never happen again.

    I'm sure insurance is the reason too but geez, you know now much leukine costs? $1650.00 for five vials (use three per week). I can't imagine what the others must cost.

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  9. Ann,
    My heart breaks for you. This treatment is cruel and unusual punishment and one day science will view this as primitive, and they'll be right. We must find a cure and another way to stop mets. Your post will stay with me for a long, long time.

    Blessings,
    Brenda

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    1. I completely agree with Brenda. Cancer 'treatments' are equivalent to torture. And doctors are compassionless robots, for the most part. After seeing the simultaneously condescending and emotionless way they treated various friends and family with cancer, I only hope they suffer untold physical torment. Also, they are all in bed with the DEA to the extent that the sick and dying are undermedicated in terms of pain relief and the relief of anxiety that pain and terminal disease can cause. "Do you want to be an ADDICT?" was one special gem I heard from the mouth of a Very Important Doctor to my partner's father, as he was screaming in pain from colon cancer with mets to the liver, lungs, and pancreas. The fact that he was an alcoholic was added "evidence" that he "just wanted meds and didn't need them." I don't understand the sadism on the part of these doctors; I don't care how much vodka the man drank; he's in AGONY, CURE HIS PAIN. Their poker faces as they talk about their "goff" game and their new cars as their patients scream in agony make me wonder if their hearts were stolen out of their bodies in medical school. Chemo"therapy" is this era's version of leeches, and meanwhile, there are a slew of "new age" snakeoil salesmen who insist that those who have internal illnesses just haven't sang Kumbaya enough. It all is utterly enraging. None of them are healers; they are all Schadenfreude-filled sadists.

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  10. Hi Ann,

    So sorry to hear of your awful experience. Hope there are other meds that you can tolerate better. Let us know what how it goes. In the meantime, I'm praying for you!

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  11. Unspeakable pain, Ann. I'm so sorry about your experience. It astounds me, too, how inconsistent reactions and side effects can be during this bc experience. I'm a year and a half post surgery/chemo/radiation and am on Tamoxifen. I still get bizarre aches and pains that come and go in various parts of my body. To me they are inexplicable and sometimes alarming. I've learned that this cancer thing is never really over. Or at least ... for me and many others ... it goes on a lot longer than we could ever have anticipated.

    As others have reported, I was on Neupogen and didn't have any problems with it. My nurse mother-in-law would visit me daily to give my injection. I could never bring myself to put a needle in myself, coward that I am.

    Trust your body and your instincts, Ann, as you are. Be compliant to yourself.

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  12. And believe it or not, but those freshmen will manage without you there to get them started in the right direction. Just sayin ...

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  13. My doctor says we'll try neulasta next time. I hope that isn't as bad!

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  14. And, to bring out the conspiracy theorist in me, ever notice that most of these doctors are men, and most women who die of cancer do so because of cancers that begin in their "lady parts", ie breasts, cervix, ovaries, uterus? I am a 29 year old person who was born a woman, but I have never valued anything 'womanly'. I don't want a man, I don't want children, I don't enjoy having breasts, and literally every woman in my family has died BEFORE THE AGE OF 45 from cancers of these very parts. When I tell this to a doctor (male or female) this fact, that I don't like children, don't want them, don't like men, and don't want to die like all of my relatives and therefore would prefer to have the whole lot shoveled out, they tell me that it would be "malpractice" for them to do so because I "haven't been diagnosed yet" and am of "childbearing age" aka "pre-pregnant", even though I am a lesbian and will NEVER get pregnant or want to. So basically, to safeguard my health against the type of family history that makes cancer out of all the organs I never wanted in the first place and don't need, I am at mercy of doctors who would rather that I play "Russian Roulette" with parts I despise. In my opinion, the doctors WANT women to get cancer...how else to prove their omnipotence as well as the ultimate weakness of a woman lying in bed, victim of all the 'lady parts' that are considered so icky--yet necessary, even though tumors are, at least in my case, a function of "when, not if"?

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