Another Win! Round 5 Begins

Okay -- here's the scorecard in this battle to date:

Round 1 goes to cytoxan (a draw)
Round 2 Sabine!
Round 3 Sabine!
Round 4 Sabine!

But first of all, we want to give thanks to all of you for two important things:

1. The power of prayer.

2. The power of human knowledge and development in our medical care system.

[As the old song says, "You can't have one without the other..."]

You all have been faithful friends and family and we have continually felt your uplifting prayers and best wishes. Thank you! Thank you!

As a result of the disease Sabine has (multiple myeloma) it has raised its ugly head in what is called "light chain disease." These nasty little proteins from cancerous cells originating in the bone marrow where the ones that started all this when they jammed up Sabine's kidneys and caused them to fail.

The first blood test (Lambda Light Chains) revealed a level of 10,800 of these protein critters [Mg/L]. The high "normal" level is 26!

After the first round of the Velcade + Dexamethasone chemotherapy they were reduced to 1,470 After the second round they were knocked down to 216. And after this current round (Round 4) the result was even better: only 100 were found in the blood test.

We still have a ways to go. But after our meeting with Dr Sheehan today we are ELATED! And we are ready now to begin ROUND 5 on Monday to knock these guys out!

Old Roots and Stomping Grounds

Heading out of Madison on our second "weekend away!"

We had hoped to attend Samantha's softball games but they were all cancelled due to the weather (snow and temperatures in the 30s!). That's what we like about living in the midwest -- challenge!

We stopped at Red Wing and stayed at the historic St James Hotel on the Mississippi River. As you can see the river is high, the wind relentless, and it was COLD!

Our next stop was Northfield where Sabine grew up. This is a pic of her old house on 6th Street. It was early Sunday morning so we didn't ask for a tour!


We stayed at another historic river hotel, this one is called the Archer House and goes back to the wild west days of Northfield, Jesse James and the great bank robbery.


We wandered around the Carelton College campus where Sabine spent quite some time. Although she went to Gustavus Adolphus College in nearby St Peter, she worked at the college when she was in high school.

Reading the kiosks we found an Earth Day event: learn how to contradance and support Earth Day. Why not? We both like to dance and so we took the lessons (contradancing, by the way, is sort of an English/New England form of square dancing).





There was a live band and here we are doing the "light fantastic!" (The students were not impressed!). And, yes, they all looked sooo young!)
















You probably didn't know that Northfield was the home of Malt-O-Meal. This is their old mill on the Cannon River. (It looks like it has been converted into condos). They built a new facility just west of downtown near St Olaf College.

Sabine reminded me that the river separates Carleton faculty and students from faculty and students from St Olaf College. You have to live on the correct side of the river depending on your allegiances.

We had the opportunity to attend All Saints' Episcopal Church in Northfield. There is a strong family connection with All Saints': My grandfather, Everett Wilson Couper was ordained to the priesthood in this church in the early 1900s and it became his first parish. It was great to see that the church was thriving and alive!

Earlier, on our Sunday morning walk around the Carelton campus before church, we came across this labyrinth. On the other side of the pond there is a plaque inscirbed with Mary Oliver's poem, "Summer Day."

Some of you may remember it's last line: "What is it you plan to do with your one, wild and precious life?"

So we thought and we walked this labyrinth. At the end we asked each other, "And what did you learn?" We both said the same thing: a labyrinth brings you quickly to the center and then takes you away from it. As you walk, you come closer to the center from time to time only to move away from it again. Just as you think you know where you are going, you go someplace else. But at the end you always find the center!

A good metaphor for our life together... May you, on your journey, not be discouraged when you don't always find the center -- it is there for you and you will eventually end up there.

Has it really been a week?

This week went by too quickly! We had wonderful weather (70+ degrees) for a few days and then torrential rain (yes, our driveway got it again!) and this morning we see little snow flakes flying around. Has spring come and gone?

This weekend we had scheduled our second weekend away. We were headed up to St Paul to watch our granddaughter, Samantha, play in a high school softball tournament when we got a call from her father, Peter, telling us the games were cancelled! So we re-scheduled and ended up at the historic St James Hotel in Red Wing on our way to Northfield where Sabine grew up.

Sabine had her lab work done last week in preparation for our meeting with our oncologist/hematologist, Dr Sheehan, this coming Wednesday. Thankfully, this last round of chemotherapy has been fairly well tolerated by Sabine and we are looking forward to some good news on Wednesday anticipating the chemotherapy knocked out some more of those nasty bone marrow cancer cells.

I had the opportunity to meet with the director of the UW Cancer Center last week and give her some feedback on my experience with the "system." I pointed out some things I thought the Center was doing well and some areas that I thought could be improved. The good things were the nursing staff and their getting back to us when we had questions and the free valet parking system that enabled us to physically get in and out of chemotherapy with few hassles.

On the improvement end, I was pleased to find out that the improvements I was recommending were in the process of being implemented -- a method to provide face-t0-face contact with patients and their families coming to the Center for diagnosis and treatment. While the Center has a lot of helpful information regarding various cancers, their treatment protocol, and support groups no one makes a personal contact with newcomers. What they are considering is a volunteer to contact each new patient and help them negotiate the system -- where the restrooms are, that the coffee and treats are free, what support systems are available, what they might encounter during this visit, etc. I think this will give a human face to the cancer fighting system and help improve things for patients and their families.

Tomorrow morning we plan on attending All Saints' Episcopal Church in Northfield which was my grandfather's first parish after ordination in the early 1900s. It was also the church associated with my call to ministry in 1991 when Sabine was attending her 20th year reunion at Northfield High School.

These weekend times away are very important to us. It seems that our weeks are filled up with dialysis, medical appointments, chemotherapy and lab tests. Weekends give us two days off from the routine and time to recuperate and connect.

We are still keeping up on our woodland wildflower project and will have some new wildflowers to post this coming week. We appreciate your checking in with us personally or through this blog. As we have said before, we feel your prayers and love. I know you all will be with us in spirit this Wednesday at the Cancer Center.

Winding up today, I found two things that I would like to share with you: a poem and a prayer:

The poem is called "Prayer Chain" and it is by Tim Nolan. I found it on Garrison Keillor's "Writer's Almanac" on America Public Media (http://writersalmanac.publicradio.org/ )

My mother called to tell me
about an old classmate of mine who

was dying on the parish prayer chain—
or was very sick—or destitute—

or it had not worked out—the marriage—
or the kids were all on drugs—and

all the old mothers were praying intensely
for all the pain of their children

and for life—they were praying for life—
in their quiet rooms—sipping decaf coffee—

I bet they've been praying for me at times—so I'll find my way—
so I won't rob a bank—

I'll take them—the mystical prayers of old mothers—it matters—
all this patient and purposeful love.

And today's prayer comes from the Pentecost, 2008, edition of "The Anglican Digest" (http://www.anglicandigest.org/).

Lord

Help me to live this day,

Quietly, Easily,

To lean upon Your great strength,

Trustfully, Respectfully,

To await the unfolding of Your will,

Patiently, Serenely,

To meet others,

Peacefully, Joyously,

To face tomorrow,

Confidently, Courageously.

A Walk after Round Four

[I have had some trouble posting the pictures with this blog. It's now Monday morning and I have access to the highspeed internet computer at the dialysis center -- so I hope these pics come through this time!]

Thursday morning, Sabine took her last shot of Velcade on this cycle of chemotherapy.
Round (#4) has now ended and she is still in there fighting.

(If you recall the cycles they go like this: Sabine has twice weekly IV injections of Velcade and takes dexamethasone one a week orally. This goes for a two week cycle and then she has a week off wherein she has a rest, has blood tests taken and then meets with her oncologist/hematologist the following week. This meeting will be on the 30th so keep up those prayers for some good numbers!)

I thought I would also enclose this picture taken from our north hill towards the "mound." You can see why the first settlers called this Blue Mound.Enjoy the spring -- we have had 60s weather but still some snow remains on the north side of our barn to remind us of the winter past.

We have included some pictures from our afternoon celebration walk on the north hilltop.On our walk, we found our first wildflowers on top of the south hill! We will have to get out our wildflower book and see what these delicate blossoms are! We think they are Rue Anemone -- a rare plant.

We saved our picking for Charlotte's blossoming flower garden and some beautiful daffodils. Sabine's mom, Charlotte, is well ahead of the wildflowers this year with her south-facing flower garden. It has already produced these wonderful daffodils now residing in our home!

Sabine has also been encouraged by the prospect of doing home dialysis in the near future. She would have to have surgery to put a "fistula" for dialysis purposes in her forearm. In about 6 months that fistula would be grown into her arm and covered by a layer of skin which would be punctured with a needle each time she did dialysis.Home dialysis is generally two hours a day, six days a week -- but you can travel with the suitcase size unit! Another good thing about home dialysis is that the person with that kind of fistula can actually go swimming and kayaking!

Sabine took a picture of me and Mocha.

I'm the one wit the feather!

1,000 Paper Cranes

From Sabine:

As you know, from time to time I submit short notes to the blog. Unfortunately, my cancer has made me no more computer-literate -- probably worse! I have never read this blog myself (except David will print out your comments from time to time). So remember, only the good things David sends out are true!

I am writing this "true confession" as I must admit that although the wonderful cards and letters you wrote me lifted up my spirits, those that arrived in the first two months of my illness went unopened.

After my diagnosis, I discovered that in reading your wonderful words of encouragement and offers of help I would break down in tears and after the first sentence or two I would be left exhausted.

So, I placed all your cards and letters in a box until I felt strong enough to engage all that emotion and love. That time arrived this past Monday and I sat on the couch absorbing all that love and support. Rather than crying tears of sorrow and feeling completely overwhelmed, I found myself still crying but feeling energized. It was wonderful!


I would like to share with you a particular card that I received from Maryville (MO) sixth graders (where my sister, Barbara, used to teach before her retirement). The kids had read a biography of a Japanese girl, Sadako, who developed leukemia as a result of the bombing of Hiroshima during WW II.

Japanese legend holds that if an ill person makes 1,000 paper cranes their wish to be well is granted.

So, the Maryville sixth graders folded 1,000 newspaper cranes and when they hear someone is ill they clip several and send them to the person. I am happy to say that I am the recipient of two of those cranes. What a wonderful gift!

I will never be able to express what all this attention has done for my spirit and my healing. I love you all and thank you.

Sabine

Cow Hunting!

After church today we decided to go to New Glarus for lunch -- and do a little "cow hunting!" (no tipping allowed!)

New Glarus is about 30 miles southeast of Blue Mounds and a village settled by Swiss immigrants in the 1860s.

Look what we found wandering the streets of this quaint Wisconsin village.

New Glarus is home of the William Tell Play, the Heidi festival and polka dance every weekend!

Sabine has a new goal to attain!

Blessings to all of you!

We start Week Two of the fourth round on Monday!

Snowy Saturday

From time to time I think the chemicals catch up with Sabine. I can't imagine what this is like -- having someone put poison into your body on a regular basis. But she holds up well and is always the positive thinker; and me, well most of you know me -- warily spying out the negative possibilities...

The nausea had been creeping up on Sabine and she is resting today. We were going to celebrate her mom's birthday today with Sarah and Josh coming over -- but Josh had two flat tires and Sarah had engine trouble. We will try and reschedule for next week.

This morning on my woodland walk with my trusty pooch, Mocha, I thought about my "warily spying out negative possibilities" and a poem fell into place...



like midnight baby-watching
of so long ago
i watch and listen
to you
your nighttime movements
is all ok? yes
regular breathing
no fever
i drift back to sleep
thankful
for another day
where you bring me
far more joy
than i you
you see my fearful watching waiting
perhaps these are the demons
with which our ancestors struggled
hope against resignation
trust over terror
they are no less real today
nor any less vulnerable
to the living God
whose name is constantly
on my lips



Two weeks ago it was in the 60s and the snow was fast melting.

This morning, on top of our hill, the snow clung to the trees and ground... reminding us that this is Wisconsin.


Our footbridge over the creek which marks our coming and going. No trolls beneath? See above!

Hope you all are having a great week. Thanks to those who continue to reach out and cover us with love and prayer.

Glancing up from my office this afternoon I see that all the snow has melted. An encouraging sign!