Tuesday, April 26, 2011

Trying to get it right

Dialysis.  Sounds simple, right? Just hook up and away you go! 

I wish it was that simple and easy.  Sometimes the body does not want to do what the operator (me) is intending to do. 

On each of our five days of dialysis each week I must place two needles (arterial and venous connections) into Sabine's arm to begin the dialysis.  I cannot hook her up to the hemodialysis machine and start the run unless those two "connections" are made. And that "connecting" means putting a needle into her arm squarely into the vein, getting a "flash" back indicating it's "in;" flushing the needle and plastic tube and then connecting the machine (artificial kidney) to the tube in order to being the process.

Now even if all this looks good (connected, a flash, and flushed) if the pressures are too high we might have to reposition the needles, start at a slower speed (and longer process) and constantly re-evaluate the procedure based on machine pressures.

The connection goal is to place a "blunt" needle into something called a "buttonhole" in Sabine's arm. The buttonhole is made by inserting a sharp needle for a number of weeks into the same site and same angle each time -- thereby creating a "buttonhole" which can be accessed by a blunt needle through the same "hole" (which, obviously, is a better method than using a sharp needle at a different site on her arm each day!).

But of course, the body is not like working on a car engine.  Machines are predictable and usually if you have to connect a hose to a machine it's fairly simple; that it, the site nor the angles don't change from day to day.

We have been struggling with connections this past week.  The week before everything went "textbook." When problems start to happen, we either have to make the connection with a sharp needle in the buttonhole (something we want to try and avoid) or discontinue the treatment cycle.

When this occurs, it causes a lot of tension (and frustration) on my part.  Why can't I get this to work?  What's wrong with me -- or my technique? 

Sabine seems to do much better than me in these situation.  She is always calm and re-assures me that her body is simply not cooperating today and it's not me or my technique.  Still, I feel bad when all this doesn't work.  Sometimes I have to call the clinic in Madison for reassurance and we go through my actions and talk about "options" like discontinue for today, use a sharp, or (worst yet) come on down to the clinic and they will give it a try.  Thankfully, we haven't had to do the clinic option for some time!

So, that's our life as patient and practitioner.  Most of the time dialysis goes like a whiz.  But on days like this, when things don't go right, when I simply cannot get the needles into the "fistula" and have to try again and again and then resort to a "sharp," I feel the pressure (and it's not from Sabine, it's the pressure I put on myself and the frustration I feel). 

What's the spiritual lesson?  I know.  It's being calm.  Accepting what is. And being grateful for the fact she is still here with me and I am still able to hold her and love her!

So what am I complaining about again? Life is good.

Peace.  Spring is coming -- I see Robins, wet and cold Robins!

Soon we will all dry out.

Monday, April 18, 2011

The Chart

The "Numbers"
We see Dr Sheehan this coming Wednesday.  And since I usually get the lab results before we see him I have started making a chart of the cancer numbers as a "visual cancer aid."  This way I can see better what is going on. 

So, this month is a good return (#59).  Another depression in the cancer numbers (the amount of "free lambda light chains; those nasty proteins that have clogged up Sabine's kidneys and messed up her blood)!

To the left of the chart is the time after her stem cell transplant; then a climbing of the numbers to #133 and then the oral chemotherapy (Revlimid + Dexamethasone).

I think what is going on here is that Sabine needs to take enough of the chemo to repress the cancer but not so much as will destroy her blood chemistry.  For example, her hemoglobin is around 10 (normally 14 or so) and her platelets around 100 (normally 150+).

Meanwhile, Sabine keeps up her joyful spirit and exercises daily!  Life is still good!

And Resurrection Sunday is on the horizon -- and it is both a faith and life event for the two of us!

Tuesday, April 12, 2011

Energizer Bunny

That's us, spring camping in the Rockies -- circa 198os
Sabine was born on Easter Sunday and her family often called her "Bunny" in German (Haase?). So I have often thought of her over these cancer years as begining the Energizer Bunny of the battery commercials!  We celebrated our birthday last week (yes, we both were born on April 5 but in different years) and every birthday with cancer is a good birthday.

Sabine has been on chemotherapy with the oral drug, Revlimid, since November and it has steadily repressed the cancer and still is.  Something to be greatly thankful! (And on top of all that she continues to exercize each day and teach Sunday School!)

So we had a good birthday week with lots of contact from friends and family.

We drew blood for tests this week and will be seeing Dr Sheehan next week for the results. 

Summer is coming... and Sabine is looking forward to spending time on the farm and for another Couper family reunion which this summer will be houseboating on the Mississippi River!  Anchors aweigh!

Friday, April 1, 2011

Home Dialysis

5 of 7
a week
260 out of
the time
we jokingly call
“blood washing”
the machine
the supplies
the cartridge
2 by
11 inch
out with
the bad
& in with
the good stuff
redder than red
cleaner than clean
60 plus
like lovemaking
we do it
at home
or camper
these days
keep you
going yes
each day
we set up
tape needles syringes
gauze, swabs, pads
masks, gloves
& picks
to find those
those pokes
(most of the
time a buttonhole
soon off we go
three hours of
& cleaning
from the magic
& us
up on your feet
out the door
our life
for a time
free at last
& yes thank God
free until