A Summer (Almost) Without Cancer

The Couper family's "Restoration Cruise" this summer.

This Spring Sabine received a 12 week respite from her daily regimen of chemotherapy. It was a welcome break which enabled us to forget (almost) her cancer this summer. Next week is the 12^th week and time for the blood test and conference with Dr Sheehan that will tell us what the cancer is doing or (hopefully) has not doing.

The respite permitted us to have a more flexible dialysis schedule, take a number of kayak trips, attend plays at the APT, and engage fully in my family’s “restoration cruise” on the Mississippi River last month (see http://christinyouchristinme.blogspot.com).

Sabine with granddaughter Taylor.

So, it has been a good summer. But for me, it always seems that I am looking over my shoulder, warily watching out for the cancer which seems to stalk us. Yes, I worry... but it seems that this summer I have worried less than I have the past two summers. And that’s an improvement.

But last week Sabine had some back pain. Alert! Warning bell! The urinalysis was negative but we have not heard back on the Xrays. Waiting. Worrying.

Sabine continues to exercise daily and reports the pain it not as bad as it was last week. Still back pain (and the complications regarding bone loss with Multiple Myeloma and dialysis) is something I will continue to worry about.

So, it’s back to see Dr Sheehan next week at the UW Cancer Clinic and formulating some next steps depending on what those nasty light chains in Sabine’s blood were up to (or not up to) this summer.

In January, we will enter our 4^th year living with cancer. I know we both are grateful to God for the time we have been given and the family and friends who continue to pour out their love upon us. Yes, life is good! In fact, it is very good!

Six Week Numbers

 Sabine has been now six weeks without chemotherapy. The "cancer numbers," though not zero (as we continue to hope and pray for) have not risen too dramatically. When we stopped the chemo she was at 26 (normal free lambda light chain range is 5.7-26.3).

Now the blood test revealed that it had risen to 42. My prediction is that Dr Sheehan will not take action and wait until the 12 weeks without chemo are completed. The next test in 6 weeks will tell us the rate of the increase and dictate our next steps.

In the meantime, Sabine is enjoying the summer by being active -- exercising for about an hour each day, kayaking, cycling and, after seeing "The Jersey Boys" in Milwaukee this week, humming all those great songs from the Frankie Valli and the Four Seasons -- "C'mon Marianne, Ragdoll, Silence is Golden, Bye Bye Baby, and Can't Take My Eyes Off of You..."

Lazy Summer (so far)

Here we are at the mid-point. The summer off -- no chemotherapy for Sabine.  Tweleve whole weeks! Now it's at the half-way point and today Sabine goes for a blood test to check and see what the cancer has been doing (or, hopefully, NOT doing!). It has now been six weeks without chemotherapy and this coming week we will know what has been going on in Sabine's blood... and what our next step is...

Nevertheless, it has been a hot, but nice summer. We have been exercising daily, kayaking the Rock River, tandem cycling in Penninsula State Park in Door County and attending the American Players Theater in nearby Spring Gree.

Son Michael came for a few days and went cycling with me. It's been 28 years since we went cycling together. Nostalgia.

And in less than a month, the Couper side of the family is getting together on the Mississippi River at Lansing, IA, to do some serious houseboating!

Carpe diem!

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.