Sabine's Newsletter Submission

(The following is an article Sabine recently submitted for the Wisconsin Dialysis Center Newsletter)

It has been a long time since I have written an article for the newsletter. Some of you may recall that I was diagnosed 3-1/2 years ago with multiple myeloma (a “terminal” blood cancer) which usually carries a prognosis of five years. My cancer first presented itself through acute kidney failure. So, in January, 2008, I not only started chemotherapy to try and control my cancer, but also began dialysis due to my kidney problems (end-stage renal failure).

At first this was extremely overwhelming! I had only retired five years earlier from policing at age 50 and had many plans including visiting our adult children spread across five states. I chose early retirement because my husband, David Couper, who had retired from the Madison Police Department five years earlier, was older than I was and I wanted to be able to spend more time with him. Dialysis, however, complicated everything – or so I thought.

My HMO would only pay for my treatments at the Wisconsin Dialysis Center so it was not feasible for us to consider doing any out-state travel. I was devastated because I knew our children had limited time to get away from their jobs and busy lives. Six months into our thrice-weekly clinic dialysis schedule we were presented with an alternative – home hemodialysis. It would require training, but would permit us to travel. For the past three years we have gone to Florida two weeks during the winter season. Home dialysis permitted us to continue to have a winter vacation in a sunny and warm place. So, two years ago, we purchased a slide-in camper for our pickup truck and drove to Glacier Park, hiked, camped, and dialyzed in, perhaps, some of the most beautiful mountain settings! This year we have two more road trips – house boating on the Mississippi with kids and grandkids and, in the fall, going to Branson, Missouri.

All of this, however, has not been smooth sailing! It took three failed fistulas before we were able to button hole and get rid of the tunnel catheter in my chest. I was fortunate enough to be able to receive a stem cell transplant in the Spring of 2009. This put my cancer under control for a while and I was working toward getting on the kidney transplant list and possible transplant if my cancer behaved itself for 24 months. I didn’t and it returned. I was back on chemotherapy and, again, devastated. I gave myself twenty-four hours to cry, feel sorry for myself, and used word I hadn’t used since our children arrived!

Back on chemotherapy and dialysis, I refused to waste any more of my precious time in such a wasteful, unconstructive way. My husband, David, gave me a great insight recently. He questioned, when something terrible happens to us, how do we know it’s not a blessing? With my original cancer diagnosis, I first assumed it was a disaster. But now looking back at the past 3-1/2 years, I know it was really a blessing. He and I have spent more time together, we choose our travel carefully and deliberately, we both take much better care of our bodies (daily exercise, eating healthy, and regular check-ups) as well as improving our minds and cultivating our spirits. He would have continued full-time work in ministry and I would have continued my part-time work at Lands’ End. This would have resulted in us seeing each other after work (usually tired and drained) or on weekends (doing yard work and other domestic chores). Why? Because we all assume there will be more time to do things together (even to work on our relationship) in the future. We all know that a slower day will never come. All we really have is now.

Each of us has a responsibility to live our lives fully and celebrate our life every day.

Health and happiness,

Sabine

A Time of Rest

The cancer "numbers" are now within standard range and so Dr Sheehan has decided to suspend the chemotherapy for 12 weeks and has given Sabine a chemical-free summer! There will be a mid-term blood chemistry check at six weeks to see how things are progressing (or, hopefully, NOT progressing).

Our prayer is that the cancer remains "restrained" from growth and God guide the hands, hearts and minds of those doing research in Multiple Myeloma seeking a cure.

We know at this time that this cancer is not "cureable," but hopefully "manageable."

Life is still good.  Love trumps!

Numbers!

After about seven Revlimid cycles of chemotherapy, Sabine's "lambda light chains" are just in standard range (26.3) [standard range: 5.7-26.3].

My prediction would be that Dr Sheehan will go ahead and give her a "rest" from the chemotherapy and see what the cancer does. Sort of a "wait and see."

Sabine gets pretty tired by the end of the chemo cycle, but continues to exercise six days a week. Hemoglobin and platelets are down but not to the point of danger.

We have a busy summer ahead. This weekend hosting 20+ Coupers and Lobtiz's... and then there is the big Couper family reunion in August.

We continue to serve at St Peter's in North Lake.

Life is good.

Thanks be to God!

Spring has FINALLY arrived!

This has been a cold and dreary spring until this week. Eighty degrees and sun!  Our old bones are moving again as we hike the trails, do yard work, and bring out the lawn furniture and get the pool ready.

Sabine has been tired (but she is not slowing down!) with this chemo regimen.  We are taking blood this week in anticipation of our meet with Dr Sheehan next week.  We are hoping and praying that those nasty proteins are being diminished and that Sabine's blood chemistry withstands the chemical assault.  It's a balance between killing off the cancer and preserving her blood chemistry.

All in all, things are stable.  Life (so far) is good!

Here are some spring pics:

Napping poolside in the screen house with our trusty companion, Mocha

Dinner and a night in Chicago

Spring has come to New Journey Farm, flowers and our creek in the background.

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.

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!

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!