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Saturday, October 25 2014 @ 06:47 PM PDT

A Pain in the...

Another in the series on my cancer. I'm up at 1:30AM after having had to deal with pain, so it is fitting that I start this article on pain and how I think I've finally come to an understanding of the medical peoples' view of it versus my view of controlling it.

Over the now 16 days I've been here in Maple Ridge Hospital, I've been on several different regimes of pain controlling medicine. Initially I was on Intravenous (IV) drip with a bag of morphine every 4 hours added to the base fluid system. This is what allowed me to sleep finally after all the nights I'd spent simply having back pain from trying to lie down, and it worked well for that.

What I have to remember and to tell the medicals about my particular pain trials is that it is, and at least for now really will always be, about the pain that manifests itself as back pain, growing when I lie down, and keeping me from sleeping. As I had to explain to the nurse just now, the pain of the incision and surgery really is secondary to this other pain, and that the surgery, while absolutely having done good in and of itself, didn't relieve me of the whole initial pain.

More than that, I've noted over time that this "base" pain is growing where I fully expect the surgical pain to lessen and eventually go away. This is likely not typical. My cancer seems (and for now I'll simply say is, as I don't yet have any definitive info on overall progress from the biopsy, nor on it's actual type or prognosis - you may learn that in one of the articles that shows up prior to this one being finished and published - but at this point I simply don't know) to involve an interaction between the liver and colon and/or lymph nodes that is the root cause of this base pain. I'm presuming that the surgery did not "get it all" since in fact the surgeon said as much just afterwards. Whether or not chemo and/or radiation will do the trick is yet to be seen or even offered. 

So the base pain is not going away, and yet the medical staff want me to go home - and so for that matter do I. I just want to know that at home I'll be able to deal with this pain well enough that I don't end up back in emergency, having relinquished my bed to someone "sicker" than I am on the theory that I am well. I'm not well, but the question really is, am I well enough to continue my eventual therapy as an out patient to the cancer clinics, etc? Or should I stay here in direct touch with those who can change things as and when necessary to at least keep me sane enough to make rational decisions on what is next? That's my goal in this initiall stage of pain management as you'll see...


So I have to explain all this to the nurse who is trying to nail me down to some sort of regimine involving Tylenol 3 (with codine), morphine, and Percoset.

The Percoset had only that day been added to the mix, and I had not had a chance to do any research on what it is - only dealing with the numbers of hours and trying vainely in my head to form some sort of pattern to the potential pain relief of these options: T3 every 6 hours but not really, on some sort of schedule my mind had not had time to process, add in percoset potentially every 9 hours on an either/or basis and then add in the potential of morphine pills in one of two doses - and then throw in an extra, different dose (7.5mg) that I'd not had before with again different numbers of hours between. Add in needing to take at least the morphine on an empty stomach and, and, and.. Oh my head - and she wanted me to deal with this while my pain was at the clinically insane level? Nope, suck back, reload, give me anything and lets talk when my pain is below 5 on the Richardter Scale (with minor apologies to Richter)

I got here over the intervening 16 days with a set of different pain control scenarios, regimines, information, dosages, effects and side effects to consider.

When I was initially admitted in emergency I was already minorly insane from lack of sleep (halucinating in fact), and such side effects of the morphine they gave me as there are didn't make any difference to me then. I wasn't about to sit down and really work at writing like I probably otherwise would have, I couldn't focus for more than a couple of minutes on any single task so just dealing with the pain was all I asked of it, and all I really noticed. In fact I didn't even have my laptop at that time, only my wonderful Galaxy S II and a bunch of music to wile away the time with.

As I moved through the system and my diagnosis changed from sleep-deprived ulcer patient to unknown problem and finally to colon cancer sufferer I moved off the drip morphine to "pushes" of liquid morphine into the IV system at times when I asked for them (essentially the same thing, just not ladled out over 20 minutes but rather concentrated into a few seconds) and looking back, the other difference was in concentration or total amount. The drip bag was 5mg and the pushes were 2.5 each or about half as much.

Again, rather than simply on a schedule as the IV had initially been, the pushes became "on demand" as in "if you have pain, call the nurse and she'll either give you the next push or tell you it is a bit too soon and please wait for some period of time," and I eventually learned that the period of time was something like 3 hours, where the IV bag was every 4 hours initially and then "on demand but not more than every 4 hours."

To get me off the liquid morphine, they started me on pill-form in one of two different dosages, 5mg and 10mg and again I learned that the dossage for on demand was either every 2 hours for the 5 or every 4 hours for the 10. I also discovered the hard way that taking these pills on top of food pretty much rendered them ineffective and went off them for a bit just as they were trying to get me off the IV because of this. It took me a bit of reflection to realize what had happened and why the extra pain hours had happened - but by that time I'd hit the 9+ pain threshold and gone insane long enough for them to have done something, I don't really remember what. I think that was when they started me initially on the T3s, 2 tablets every so often - and my confused mind still tries to tell me it was every 4 hours - but now I think it was "on demand but not less than 4 hours." The problem is, they only lasted me about 3 hours and then, before I could get more, the pain would rise above the 5 level at which I can't ignore it. I needed something else.

But then, along came my colonoscopy and the next day, surgery. I was back on the IV, back on morphine drip or pills - again, looking back I don't recall (I'm going to have to see if I can get a copy of my drug record but that's for another time)

I was also on very restricted diet - clear fluids, then nothing, then clear fluids for a very short while, then only ice chips after the surgery and they gave me a morphine "all you can eat, you administer it yourself" injector. A new toy, dosage and regimine to discover and play with.

Yes, play with.

By this time you might have guessed that I don't think I'll have any addictive problems with anything I take. I do know about the potential with most pain killers but I'm simply not that kind of dependent type. I have in the past given up all manner of "addictive" things cold turkey for months and even years at a time. I did again with the "ulcer" diagnosis when I gave up both coffee (12-20 cups/day) and wine/beer/alcohol (up to 1 litre/day but not every day) and until about a week ago had neither, nor any craving for them.  I finally had a beer with my pizza at lunch with my sons a week ago Saturday to celebrate my not having to deal with an ulcer diet, and had 4 cups of coffee the day before; the day of my bone scan. I've only had 1 or 2 cups of coffee per day since, and alas, no more beer, but again I don't really miss it.

So, I played with the morphine machine.

I had no information on "per push" dosage, what the max dosage the machine would dispense at once was, or over any particular time period. I only had the information that if I tried to use it too much I could not do any lasting harm and at worst would simply fall asleep. So I played. 

I pushed the button 3 times in quick succession each time I felt I needed a hit - and when the hit didn't take effect fast enough, I'd press it 3 more times within the hour to see if that helped. I did get to the point where I could get enough to feel drowsy, and eventually I got to the point where I could maintain all I needed fairly simply, but along the way I finally got a look (as the nurse read out the counters one day) at what it thought I'd done - 44 applications for 96 tries - about 2-1 too many button presses for the machine's liking. By that time I'd pretty much settled down to what I needed, and no longer tried multiple hits at once or in less than about 2 hour periods.

My son took it upon himself to contort his view enough to read the label on the bag in the back - the dose was 5mg each, which I'd pretty much concluded. Interesting and one more fact added to the pack I was growing for "later."

Now, as I contemplate leaving this fine establishment for the uncertainties of out-patient care from my home, I have to take all this into consideration and not only build what I think will be a working regime, but "sell" it to the powers that be, the doctors, in such a fashion that they understand that I'm not interested in their need to boot me out, only in my need to be able to survive once out, including dealing with what I perceive as the ongoing increase in the base pain level as my disease progresses. I don't (and they don't) yet have enough information to know if I'll be able to expect some sort of therapy that will reduce or eliminate it, so it is simply complicated.

The Tylenol 3 dosage and schedule: the hospital schedule purports to be "every 6 hours" but isn't. That would be something like 8AM, 2PM, 8PM, 2AM - and theirs is 8AM, noon, 6PM and 10PM - biased towards meal times and bed time, fairly obviously for the benefit of the nurses. This leaves quite some gaps for me to fill since the T3s simply only last about 3 hours for me - but they are otherwise benign enough that I can get some work done and otherwise have a clear head. The other joker seems to be "not more than every 4 hours" but the nurse could not tell me if the problem is total per day or completely time related or... I'll have to ask the doctor directly. In the mean time I should do some research myself.

The Percoset dosage and schedule: this was new into the mix late yesterday and until I started writing this story I'd done no digging on it. It contains Oxycodone and aspirin as main ingredients, and as far as I'm concerned I'd rather deal in native drugs as much as possible (we'll deal with the T3s later this way) but more than that, I'm not happy about the Oxycodone as, even though I know I can deal with it if/when the time comes, I have friends' insight into the problems of getting off it. Not really interested at this point but maybe later.

Morphine pills of 5 and 10mg - these I know I can deal with, but the only side effect I'm not happy with on the morphine is a tendancy to mild nightmares/wierd dreams when asleep and a bit of a problem focussing when awake if I'm on it for any length of time. I note that I've written this story to this point after a 10mg dose, but this is the first such dose since before my surgery a week ago.

So, what do I want?

I want to be able to sleep reliably and fully when and where and in what "normal" position I choose, not huddled up on a couch sitting up after waiting for my poor wife to turn the news off after 11PM - and she won't accept me home under those circumstances in any case.

I want to be able to concentrage on work, play, exercise, finances, etc. as and when I need to, at least during the normal waking day.

I want what pain I have to be somewhere below 5, and hopefully at or below 3 on my Richardter scale, and I want it reliably kept at that level, not rising to intrusive levels before again falling back to dull roar as the hospital's "on demand" system would have me do things. I want to be able to plan a schedule around fairly fixed meal times, sleep times, etc. I do keep to a fairly consistent daily schedule but am adaptable if necessary. 

I want to be woken up before my pain wakes me, so I can deal with it preemptively rather than reactively. In the hospital this entails getting the nurses to do it - something they simply are not set up to do. At home, I can set an alarm - not an issue. I guess I can set an alarm here too, but I also need to know that I'll get what I need in a timely fashion, and there are times (shift changes, meal times, etc.) when response to non-emergency things is measured by the 1/2 hour, a time that is long enough to go from 4 to 8 on my scale and not something I really want to have to factor in.

Let's see if I can do this. I have 2 days to work with here now, and then I'm home, or not. If we can't come to some understanding - I just won't go.

For now, sleep is calling again and I'm losing focus - I'll let you know.

richard

Tag: pain tylenol codine morphine oxycodone percocet cancer

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106 comments

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Dear Richard!
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Richard,

It looks like you have a great game plan for your pain management. I hope it works for you and you are able to be comfortable and still be able to do the things that bring you joy.

I will be watching for your update.

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