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BEING
A CO-CONSPIRATOR IS
BETTER THAN BEING A PATIENT
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This month's article came
rather like a forced march... there I
was, prepping to do one of my favorite shows
in Buffalo, when my right implant decided
to throw a party. Or a fit. Or a wrench in
the monkey works, depending on your point
of view.
Whatever your choice of
venue, it sent me flying along I-90 from
Buffalo to Boston, hitting Back Bay sleepless
at sunrise and about 12 hours ahead of That
Blizzard. We checked into the hospital and
awaited the arrival of my plastic surgeon,
who will forever be referred to as Madame
Artiste or Doc Miracle (because she IS one
and she makes them happen). Her pronouncement
was that somehow we'd gotten an infection
in the implant site, and that while most
people would yank it, pat me on the head
and say "tough luck," she'd fight
for me. So it's been, so far, ten days of
huge amounts of "bug drugs" (antibiotics),
some surgery, and a lot of time on my hands.
At this juncture things
look promising. No fever, color returning
to normal, drainage from the site clear and
nonremarkable. I still have another five
weeks or so of IV treatment, but I left the
hospital intact, and between my mulish (oh,
all right, iron-clad) determination and all
your prayers, I think we will keep Corbie
balanced on both sides for the foreseeable
future.
However, I've had some time
to review what it's like to be a patient.
This was very different from my mast-and-recon
exploit in June; we knew what we were getting
then, and I'd done a lot of prep work. This
one was Psychic-Dorothy-in-the-maelstrom,
and we weren't sure where we were going to
land, or with what parts still attached.
Watching other patients,
listening to the comments from the hospital
staff to me and mine, I realized that the
biggest difference between those of us who
get out fast and successful and those who
linger or lose ground is The Attitude. "Patients" too
often think that it's all up to the doctors
and nurses and that no one else counts; that
they have to sit/lie quietly, whine if they
need help, and expect that the hospital stay
will be a big negative. We Co-Conspirators,
on the other hand, are a different breed.
Let me share what helped me so that, if you
are ever required to do the hospital dance,
you will get a feel for what will help you.
- Learn everything you can
about what they are doing. When
you know what drugs you are taking, what
the contra-indications are, and how you
can help them work, you vastly improve
your chances. For instance: there's a particular
antibiotic I'm on that says "don't
give within two hours of calcium (among
other things) because it renders the drug
useless." I knew that. The dose-giver
did not. So since I'd had a breakfast with
milk, I said "can we take this in
two hours?" and explained why. No
problem, and that meant one more dose that
did what it was meant to do.
- Advocate for yourself. While
confined to bed, I had inflating, thigh
high massage boots which I was required
to wear, along with getting a daily belly-shot
of blood thinner. Why? Because the medications
I was on and surgery I'd had gave me
a slight risk of clot and stroke (and
so does my Tamoxifen). However, when
I was once more up and running the halls
every day, I asked if we couldn't discontinue
them (the boots were annoying and the
shot was painful!) IF I made sure I kept
my 'vertical time' as much as my 'horizontal
time' during the day. After some consultation,
it was agreed that it was a reasonable
trade-off.
The deal here is that if you are willing to negotiate, and perhaps
alter your own hospital day-to-day, the medical staff might be willing
to work with you to avoid some of the more onerous items, or substitute
the real pains-in-the-patoot with lesser nuisances.
Don't, however, do this just to see how many drugs you can avoid.
If what you're taking is important, or what they are doing is vital
to your getting well, do it. With me, the hurdle was getting in a
PICC ("peripherally inserted central catheter"): a thin
strand of extremely pliable plastic tubing that snakes into the arm,
around your shoulder and into one of the blood vessels going directly
to your heart. In me, that's a good 21 inches of exciting activity.
Was I scared? You bet. Ma Feathers is a first-class wuss when it
comes to anything invasive. However, my veins are such that, having
to handle a rough drug like Vancomycin, they were collapsing every
24 hours. There are only so many veins you can use. And the PICC
protects the veins from the bug drugs long enough for the drugs to
hit the bloodstream at a point where it's not so caustic to the inside
plumbing.

At that point, I had to ask myself: what was my goal? To keep both
implants. So I screwed up my courage and let them put in the line.
And it wasn't quite as bad as I'd imagined, either. I'm typing this
on the computer while the morning dose is running in.
- Get to know your staff. By
that I mean don't just think of them
as people in charge of getting you well.
They are YOUR TEAM, your cheerleaders,
the ones who want you walking out of
their care whole, hale, and a hearty
success story. Make sure that to them,
you're not just the patient in Bed 2,
Room 813, but a name, a face, a history.
Ask about them; touch on their lives
a little, if they'll let you. Treat them
the way you would treat one of your own
friends. And don't be afraid to razz
'em every once in a while. (The residents
under my plastic surgeon tended to multiply
-- first day two, then three, then five.
When they 'held' at five two days in
a row, I told them I'd noticed their
numbers generally grew daily and asked
if the add-on had gotten lost down the
hall.)
Sending carrot cake to them after your hospital stay doesn't hurt
either, I've noticed.
- Everybody's important. People
think that there is a hierarchy in a
hospital: doctors are at the top and
the cleaning folk are at the bottom.
Let me tell you, they are all human beings
and all there with one goal in mind:
to get you healthy and keep you comfortable
while you're working on it. From the
people who made my bed to the ones who
took my vitals to the ones who hooked
up my IV every twelve hours, I got to
know everyone by name, recognized faces,
greeted everyone with warmth. Everyone.
And it made a difference for me up and
down the line.
I learned from my brother, a wonderful physician in his own right,
that doctors and nurses are equals, just doing different jobs. His
understanding of this very vital concept shows in the care his patients
get. It shows in the fact that nurses all go the extra mile for him
when he needs them to. And when you put that idea in your own Co-Conspirator's
Handbook, you will find everyone rising to the best of their abilities
for you as well.
- Differentiate between 'alone'
and 'lonely.' People
assume that if you're not visited every
moment by friends, family or medical staff,
you'll be devastatingly bored and lonely.
Not true. You are going to be BUSHED. You
are recuperating. Your body is in battle
for you. And being alone is an opportunity
for the Unseen World to come a bit closer
in a quiet time. Take advantage of not
needing to put anyone else first, for once!
When you need quiet, take it. Revel in
the silence, in the knowledge that there
is NOTHING more important than getting
well. And if you do feel lonely? Then that's
the time to ground, center, and try getting
in touch with your Upstairs Crew of guides
and angels, and the Chief Physician.
- Be ready to be an Angel
to someone else. The
floor I was on had a little kitchen where
we could get coffee or juice any time we
wanted it. I wandered in a couple of mornings
into my stay and found a woman there. We
started chatting -- her husband was in
for a brain tumor. We traded experiences
at the hospital, I told her about my own
dance with cancer, and by the time we parted,
I got a huge hug and she was a bit teary-eyed;
she happened to need a pocketful of feisty
optimism, and it's a good thing it was
wandering the halls.
One of my strongest beliefs is in 'paying it forward.' Remember that
no matter how bad your stuff is, someone else is facing their own
rough road, and a simple kindness from you can make all the difference.
And the less you are star of your own pity party, the more you enjoy
what's out there, at whatever level your medical adventure will allow.
- If it's not done when you
leave the hospital, don't get sloppy! I'm
going home with weeks of IV antibiotics
to deal with. Yes, I am doing shows, and
flying cross-country, and dealing with
all kinds of logistical hoorah in addition,
now, to carrying bags of bug drugs and
syringes and such. But if I don't want
to give up life for those weeks (and I
certainly don't), then it's up to me to
make the adjustments in my schedule and
my traveling as necessary.
I encourage you to find
ways of fitting your medical regimen, for
however long it's necessary, into your everyday
life. There are a couple of reasons: the
more routine you can return to, the faster
you will feel normal again. Also, if you're
busy, you don't dwell on the drugs, any side
effects, or what they might (or might not)
be doing.
This is a place where a
happy medium is vital -- and I'm not talking
about my colleagues, either. Somewhere between
letting your medical routine dictate where
and how you breathe, and shoving it in when
it's convenient to everything else around
you, you need to rearrange your days, make
your tradeoffs, and keep your eye on the
prize you're after.
I hope this is helpful for
any of you out there who may face hospital
time in the future. And in the meanwhile,
hats off and heartfelt thanks to some of
the best medical personnel I've ever run
into at the Massachusetts General Hospital.
They are world champions with hearts of gold
and damn fine doctors and nurses to boot.
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