Sunday, August 31, 2008


Needless to say, Sabine has been enjoying these
past 15 weeks without chemotherapy. We did labs this past Tuesday and should get the results before we meet with Sabine's oncologist/hematologist, Dr Sheehan this coming Wednesday.

In the meantime, home dialysis has been going well for us -- more flexibility. Sometime this month we will do a two-day "trial run" on the road and see how it goes. Hopefully, we plan on taking a two-week vacation sometime this fall or early winter.

As far as the elusive "fistula" goes, Sabine is scheduled for surgery again on Monday, September 8, when Dr Becker will try another method to hook up a fistula for Sabine. Prayers and positive thoughts are openly solicited!

In the meantime, we are enjoying the summer (now early fall) and are home at the cottage doing our daily dialysis.

Sabine has been running almost every day and has now joined me for some bike rides. When I think where we were last January and where we are now, I am both humbled and amazed by God as I give him thanks.

I have added a few pictures from a car show in nearby Spring Green last weekend. I salivated over both the MG and a GT Ferrari I saw!

We also visited the open house at our new EMS station just up the block from the cottage. We have a staff of some 30+ EMTs and 24 hour staffing -- it makes caregivers like me a little more secure just knowing that.

Love and blessings from both of us!

Friday, August 22, 2008

The Visit

Sabine's sister, Barbara, and her husband, Ken (who helped us out last January-February in our time of crisis) came back and spent this past week with us. They live in northwest Missouri and we, throughout the years, have treasured each one of their visits.

So we took Sabine on her first open road bike ride (10 miles) and perused the restored prairie land south of Mt Horeb, toured and picnicked at the wonderful International Crane Foundation near Baraboo, and attended a production of George Bernard Shaw's "The Widower's Houses" at the open aired and wooded American Players Theater in Spring Green.

This morning we met with Dr Yolanda Becker and her staff to explore "Plan B" with regard to the fistula surgery which failed a couple of weeks ago. Dr Becker presented Sabine with some options and we decided to take her recommendation: she would try to connect a fistula again (this time on Sabine's right arm) in a two-stage operation. Stage one is to connect a fistula deeper in Sabine's arm, and, if that takes and looks good, to have another operation that would bring the vein to the surface and be in a position to "button-hole" a fistula port for dialysis purposes. As I mentioned earlier, a fistula is the best option for Sabine and a graft a "do-able" fall back. So it's prayer time again for Dr Becker's hands to be guided and for this fistula to work!

Next week we take blood labs prior to our visit with Dr Sheehan, Sabine's oncologist/hemotologist, the following week. We are hoping and praying that these nasty blood proteins (lambda light chains) remain repressed and in control.

Sabine has been asked to be on a panel for a conference regarding myeloma in Waukesha this coming October. She will be asked to relate her experiences with the onset of this disease and a patients-perspective on her treatment.

The summer has been calm and quiet. Let's just keep it that way.

Love and blessings from us!
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Sunday, August 17, 2008

A Fine Summer

Sabine's sister, Barb, and her husband, Ken, have come up for a visit this week. As you will remember, Ken and Barb were my "life-savers" in January and spent a couple of weeks with us helping me get organized when Sabine came home from the hospital.

This time the visit was a much less hectic and stressful. Yesterday, we went for Sabine's first bike ride (10 miles) and visited some prairie sites on County Highway JG just south of Mt. Horeb (In the first pic we are lined up at the start near the health club).

The ladies on the downhill...

Ken is with his recumbent (Bike-E) that he got a few years ago.

This week we have our bi-weekly dialysis clinic in Madison on Thursday, and then on Friday, we consult with Dr Yolanda Becker at the UW Hospital regarding Sabine's recent surgery and we expect to receive a new surgery date to install a "graft" in Sabine's arm. We also will be working with the staff to try and avoid the nausea and vomitting Sabine experienced after the last surgery.

Home dialysis continues to go well for us (well, at least for me!) and we have come to greatly value the space in the cottage as our own "dialysis center." As care provider, I appreciate the compact space, cleanliness, and newness of the cottage in which to do our medical work.

We were saddened about missing grand-daughter Samantha's 18th birthday party in St Paul. But our love and thoughts were sent to her (along with prayers for passing her driver's license exam!).

I led worship at St Andrew's in Monroe today and will filling in for our local pastor, Rob Nelson, for the next two Sundays at Mazomanie and Black Earth, as he and his family take a well-deserved vacation.

Hope all is well with you as we enjoy this absolutely wonderful summer in the hills of Wisconsin!

With love from both of us!

Monday, August 11, 2008

Brightening Up!

As you can imagine, after having such a good run of outcomes, the failed "fistula" was a bit of a setback for both of us. But we are fighters and refuse to make decisions when we are not in the best of minds.

We went out for a relaxing dinner on Friday night and found a set of Trivial Pursuit cards on the table. That was just what we needed! After joking about how little we knew about anything, we went home and watched the "Vicar of Dibley," a hilarious comedy about woman priest in a small English village. The Dibley vestry is great (now those of you who have been in a church in which I have served must not think there is any resemblances to vestries past or present!). We again learned that here is nothing like a good belly laugh to put things into perspective and to help the healing process.

On Saturday morning, Sabine had signed us up for the "Depot to Depot Run;" a five mile walk-run between Black Earth and Mazomanie starting at, of course, 8:05 a.m. We walked the five miles at a sub-15 minute pace with our trusty companion, Mocha, on the leash. It was good exercise.

So now, Sabine's arm is healing up and we are back to the dialysis routine at the cottage (which could not be better for both convenience, respite, and cleanliness). We had to increase the dialysis time to about 2 hours and 45 minutes. But it is still easier than the clinic which demanded a time certain and a 70 mile round trip.

We are scheduled to meet with the surgeon again on the 22nd for what we believe will be setting a date for a graft access. This means we will have insert needles into her arm for the venous and arterial connections to the dialysis machine. It will be a little more difficult than the fistula which would be a "button hole" (like a pierced ear) rather than requiring a skin and graft puncture. And all of this is unfortunately put forward some weeks. We hope that surgery will not conflict with Sabine's next chemotherapy cycle.

One thing I am learning about being a care provider is the need to do two things: exercise and take naps. The exercise (now by bike and some walking in the woods) seems important to keep my stress down and the naps to prepare myself for both care-taking and exercise.

I think the same applies to Sabine: when she exercises regularly she maintains the "positiveness" that we all know and love about her.

The following are some pics I took at the Depot to Depot run/walk. We both look a lot better than we did the week before. The one positive, never-changing force in our life is the wonder-dog, Mocha. When we look at her we remember that great prayer, "Lord, please makes us into the kind of people our dog thinks we are!"

Blessings and peace to you all.

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Wednesday, August 6, 2008


During the early morning, Sabine had some nausea and vomiting -- we thought it was from the anesthesia. She slept in bed with her arm elevated as we were told to do. And we periodically checked the fistula sight for a "pulse" (or what is called a bruit) with a stethoscope. When I checked it at the hospital with the nursing staff, I could clearly hear it. Later and just before bedtime we checked it again and it was becoming more faint.

This morning, when Sabine woke up we could not hear the bruit at the fistula site. We called the on-call staff and they told us to go to the emergency room. By this time, Sabine was experiencing a lot of nausea and vomiting -- even though she was only eating crackers and ginger ale.

At the ER our suspicions were confirmed. The fistula graft had gotten plugged up and had failed. We got home late morning and have to make an appointment for another surgery. The surgical resident who works for Dr Becker examined Sabine at the ER told us that she would probably have to have an artificial graft put in in lieu of a fistula.

It is a setback. But we are still going forward. Anything is better than the tunnel catheter she now has in her neck. Stay tuned and keep us in prayer. At least the cancer isn't kicking back.

Tuesday, August 5, 2008


Hooray! Dr Becker reports that she was able to establish a fistula and did not have to fall back to the graft option (this is better!).

So now the fistula has to be watched and mature into a "buttonhole" for dialysis purposes. This should take 4-6 weeks.

In the meantime, Sabine and I are at the cottage and she is taking a nap after a very busy (and stressful days),

Thanks for the prayers and positive thinking that guided Dr Beckers hands and the teamwork of anesthesiology and nursing!

Love to all!

p.s the first picture is BEFORE surgery. The second is Sabine taking her first walk after surgery with her nurses and the last pic is Sabine getting dressed and ready to head home!

Surgery at UW Hospital

This past week we completed a full week of independent, stand-alone home dialysis treatment and, reflecting on Sabine's more normal blood pressures for the week, it seems she is accepting the fact that I can do the job!

This morning, as I write this, Sabine is undergoing surgery here at UW Hospital in Madison. We would ask you prayers (or positive thoughts) to guide the hand of Dr Yolanda Becker and her supportive staff. Dr Becker is doing the surgery to develop a "fistula" (or graft) in Sabine's arm so that we can get the catheter removed from her neck and do dialysis through a fistula or graft. Sabine has small arm veins so this surgery is going to be tricky.

So, to keep my mind off the surgery, I started to think about something my daughter, Yumi, recently sent me regarding an interesting quiz she found on a website called "BeliefNet."

In it, there is a set of questions you are invited to answer in order to find out what religious practice or set of beliefs your beliefs are most in harmony with.

I found it to be very interesting and something that would make good conversation between friends. So, if you are interested, take a look at: Maybe we can talk.

In the meantime, we are doing well and will be recovering at the cottage this week and also doing our dialysis there. (By the way, we got our first delivery of home dialysis supplies -- the shipment consisted of 50 boxes for the month!)

Love and blessings to all. When I get the report as to how Sabine's surgery went, I will post it on this site this afternoon.