taking

A beautifully diplomatic suggestion from Sandy.  I can only approve.

I think approaches to pain control are in flux at the present.  One hears
official pronouncements that cancer pain can and should be controlled, and
that no-one needs to suffer, while those at the sharp end know that the true
situation is a lot less perfect, and it eventually will come down to
balancing between drugged sleep and painful consciousness.  And the approach
taken by pain specialists who have studied the subject recently tends to
differ from doctors in other specialties whose training may be older.

In palliative care the object is to achieve the best quality of life, and
this means striking a balance between the side effects of drugs and the pain
they are attempting to control.  In addition one has to take into account
the future effects of becoming tolerant to particular drugs.  At the doses
you are taking the side effects are I expect minimal, and tolerance is
unlikely to be a problem for a long time.  So I don't see a problem.

One thing that can be a problem with younger, active bone mets. patients is
that pain management techniques seem to be largely devised with elderly
bed-ridden patients in mind.  What may happen if pain is fully suppressed,
is that the patient becomes more active, and causes more damage to the
weakened skeleton until the pain level breaks through the analgesia.  This
then results in a demand for more analgesia and starts an ascending spiral
of more damage, more pain, more analgesia, when a better solution would be a
reduction in load-bearing activity.  In this sort of case there is an
argument for slightly undertreating the pain so that the patients body
continues remind her or him that this level of activity is no longer
feasible.

So I can understand why the oncologist might encourage you to be constantly
testing the threshold of analgesia, to keep you aware that you are not the
sprightly young thing you once were, and prevent you from causing
progressive damage to your bones.  And of course as a general principle to
minimise drug use.

Tim Jackson

hey pat-
sounds like you've been through the works too.
i guess we all have...
the surprising thing is, considering the number and size of my bonemets, i
do alright, really.  it's been 2 weeks since i decided to go it with minimal
pain killers, and i think i might be able to deal with this pain ok.  it's
annoying.  but, i can function.  just not as well as i would like.

tim said something that rings true.  at least for me.   when i take the pain
meds, i am not constantly reminded of my critical situation...  my cancer.
i hate the word even.
when i take a darvocet in the mid afternoon when the bad aches come on, i
can just feel like a normal person.  i like that.  i just want stability and
happiness as much as i can get it.  plus a good dose of adventure when the
time is right...
i'm 38 years old - i'll be 39 this december.   i've been sick for several
years.  i just didn't know why until oct of '03.
i've lived alone the majority of my life and was raised by a single parent
in new york city in the 70's.  i've always been a  "tough kid" as some may
say.
i don't like to dwell on the fact that circumstances have put me here.  i
try every morning to wake up and live as much of a life as i can.
to that end, i take pain killers.  and so far, so good.  i've managed,
miraculously, to walk the line between independence and dependence upon
medication.  it's abig issue for me.  i was raised to believe that you don't
just turn to a pill because you have some pain.  ya know, the old stiff
upper lip stuff.  grin and bear it.
i watched my mother die of lung cancer refusing to take any pain meds till
the last 3 weeks.
well, i guess i'm babbling on...
it's been a rough couple of weeks.
i am experiencing many losses at once.
my one year aniversary of the awful diagnosis is next week.
my boyfriend who i've been with for 8 years and lived together for over 2
years has just moved out.  i asked him to leave.
he has bipolar disorder and is not making his best effort to manage it, so i
asked him to go.  the adjustment is difficult to say the least.
3 days ago, my cat of 18 years fell ill, and i will probably have to put her
to sleep tomorrow morning.
i'm experiencing extreme insomnia.
i haven't slept more than 2 hours at a stretch in almost 10 days.

i tell you all this, because i trust you.  i have been talking with you all
for a couple of months now.  usually, i feel i have something to contrubute.
today, i'm a mess.
i'm sorry for dumping here, but i guess that's sortof what it's here for.
i'm strong most of the time.  today i am not.
it's ok, though.  tomorrow is another day, and i will try again.
thanks to those of you who managed to read through this whole mess.
i hope this finds you all well.
tomorrow's another day, as they say.
sleep well.

-christina

I would keep a pain diary, when you are having the pain and what you are
doing. I would score the pain on a scale of 1-10  with 10 being the worst.
Bring the diary to the oncologist. If he afraid of ordering narcotics due to
scrutiny, he will have your diary to show the authorities. If he is still
afraid, I would find another doc, that is unacceptable practice.

Sassy, you are so right.  Sometimes I get tired of getting the "eye" from some
people when I mention that I must take daily Avinza to control pain.  Until
someone has suffered with the level of pain that we cancer survivors must, they
cannot begin to imagine why class drugs are so necessary.

When my treatment first began in 1999, the onco and I had to search for the
right level of pain medication to relieve the pain without overmedicating.  A
few weeks into gradually increasing the dosages to a good  clinical level, I
became overmedicated.  It made me sick all over and all I wanted to do was
sleep and had to be hospitalized. Immediately the onco dropped me back a level
on the medication and I was able to function pretty normal without oversedation
and nausea from the meds.  I never want to feel overmedicated again.  It is no
fun.  
With the proper med levels we are able to perform activities that without meds
we would not be able to do, i.e. being able to spend time with our families and
friends, walk around the house without pain, do our everyday chores and
personal care, and primarily just to function as a normal human being.  Abusing
the meds and getting high is the furthest thing from my mind and as you said,
most of us are very cautious.

BTW, my oncologist gave me some good advice when first prescribing narcotic
meds when my cancer was diagnosed.  He suggested keeping them in a locked box
or closet all the time.  This is especially important in a household with small
children or pets who chew, and also simply because if the meds are destroyed or
stolen, it almost takes an act of Congress to get another prescription through
health insurance channels.  Most insurance companies only allow a month's worth
of medication at a time with no refills due to state laws.  In our state
physicians must abide by the month's supply with no refills rule or be
questioned by authorities, and the laws are very much obeyed.  After all, no
doctor wants to lose his/her license due to improper storage of class drugs by
a patient.

Janice A.
Stage IV Metastatic Breast CA