Pictures from Grandson Ben's 13th Birthday!

Whoa..... the sign on the trail. (But I had reconnoitered the cliffs the week before and decided this was THE place!) Does Ben look concerned?











Ben with his Dad. Kings of the mountain!












Just before Ben rappels the 80 foot cliff. (He made two descents that day!)












Taking a break on the first day.
From left to right: Peter, Ben, David, and Neil.

Sabine's Presentation

For the first time, this weekend Sabine and I went on separate adventures.

And so today we had lunch together at the wonderful "General Store" in nearby Spring Green.

Sabine was a panelist for an area conference in Waukesha on multiple myeloma sponsored the International Myeloma Foundation.

(She was on a patient panel and I heard that she had an opening joke: "What is the difference between a pit bull and a person fighting multiple myeloma? Answer: There is no difference!)

I also heard that one of her remarks had to do with the term, "caregiver," which she doesn't particularly like; instead, Sabine and I use the term, "battle buddy!" because on the battlefield, even if you are wounded, you still fight back and watch the back of your buddy.

Instead of attending the conference with Sabine, it was the weekend that my son, Peter, and I (along with Peter's father-in-law) were going to have a weekend "rite of passage" for Peter's son, and our grandson, Benjamin, for his 13th birthday.

So, my part of the weekend is that we assembled at nearby Governor Dodge State Park and spent three days working on our rock climbing skills and rappelling some great cliffs in that park. This, of course, was not the place for either mothers or grandmothers!

We don't have a "rite of passage" anymore in this society and heeding the remarks of the late Joseph Campbell that any society that permits boys to teach other boys how to be a man is in deep trouble, we set out for the cliffs!

I have enclosed a few of the pictures in a separate post from that weekend.

But first, this email that Sabine received after her presentation in Waukesha: from one of the myeloma conference organizers:

Dear Panelists,

I want to offer each of you my personal thanks for the awesome job you all did at the MM conference by sharing your personal journeys through Myeloma land. I heard MANY wonderful comments about your speeches, and I know you absolutely touched many, and gave them hope and inspiration.

For some of you, speaking may come easily, while for others it may have been a bit out of your comfort zone, and you all did an amazing job. My only regret is that each of you only had 5 minutes to share, I know you all had lots more to say and I would have loved to have each of you share for lots longer, but you did great in the time you did have. I know you have all had many ups and downs, but the things you shared put a positive spin out there for others struggling with the same issues and challenges you have each faced.

Several people commented to me throughout the afternoon that it was the best Patient Panel ever – and for that the credit goes to all of YOU!! It would not have been the success that it was without your participation. Thank you, thank you, THANK YOU!! I wish each of you good health and success in your battle against myeloma!!

Enjoying the Reprieve...

For about the last ten years we have joined the Chesneys at their family digs on a beautiful lake near Iron River in northern Wisconsin. We thought last year was to be our last... But then the amazing grace of a summer without chemotherapy and a healthier wife.

Sabine has just purchased the winning ticket for that John Deere tractor next to her... or so she thought! We are at a little weekend fest at Cable which is a little south of Iron River.
Ted and Barb have this nice hot tub overlooking the lake and after a good period of exercise, the best place to put yourself with another cup of coffee.
We first met Velasarios Karacostas ("Vel") when we first went to Haiti -- it was a little strange, this psychiatrist doing internal medicine... he did remind us that he was an M.D. and did go to medical school!

We have followed Vel's exploits over the years and secretly wanted to get him married off (there was that nurse in Haiti who really took a liking to him). But last year, Vel brought Claudia and we all fell in love with her, too.

Sabine and I couldn't make the wedding in Cincinatti where they live nor could we make the traditional orthodox wedding in Greece. So this weekend we had small wedding reception for Vel and Claudia and wished them the kind of love that we had! We hope it's catching!
Vel and Claudia showed us pictures of their wedding while we lounged on the couch with Ted and Barb.

On Sunday, we all took a pontoon boat ride and basked in the sun and beautiful fall colors.

We left on Sunday afternoon and returned to Mazomanie for dialysis. (oh yes, the verb is "dial-ize" -- thanks, Vel!).

We have greatly enjoyed the wonderful summer chemotherapy intermission. The home dialysis is going well and Sabine's health is more than I ever thought it would be -- thanks to prayer, good medical providers, and exercise!


Here's poem for fall:

rainy sunny morning wood-walk
fragrant aromatic leaves
kaleidoscopic umbers
cack-cawing blackbirds
look!
a miniature toad hops across the trail
yes
it is good
this life we have
our hands
entwined together

Successful Trial Run

This past weekend was our trial run and doing "dialysis on the road." We decided to go about 60 miles from home to a little Wisconsin town on the Mississippi River called Cassville.

Shockingly, the cabin we had booked was the site of a fatal small plane crash earlier this month. Two students from the University of Dubuque crashed into the cabin next to ours while trying to land at a nearby airport and one of the students later died! Needless to say, it was a big and tragic event in Cassville.

We had absolutely beautiful weather with temperatures near 80 degrees. We stayed Friday night at a B&B in Dubuque (the outstanding Mandolin Inn) and went for a bike ride early Saturday morning in the hills of Dubuque and then back to the B&B for a wonderful gourmet breakfast.





Saturday was our day-off from dialysis so we then drove the Iowa side north to the ferry landing which operates between Iowa and Cassville, WI.


When we got set up in our Cassville cabin (Eagle's Roost Resort) we rented a small boat and motor and sailed north to Guttenburg, IA, a distance of about eight miles. We toured this old steamboat town and had lunch there before heading back to Cassville.

In the picture to your left, Sabine is enjoying the wonderful Mississippi River hills on the Iowa side. It was a gorgeous route!]


[Here we are heading up river to Guttenburg with a mighty 15 hp river boat!]


From our cabin front deck we could sit, have a glass of wine and some cheese and crackers, and watch the wildlife on and above the river and see the boaters passing by and an occassional tow-boat pushing up to 14 huge barges ahead of it bound for the Twin Cities.

Our first day of dialysis was early Sunday morning (we had attended church Saturday evening at a church in Cassville). We had packed the car with the supplies we would need and packed up the 70 pound dialysis machine in the back seat. All went well for the first dialysis treatment.

Later that day, we went to Stonefield, the farm of Governor Nelsen Dewey, the first governor of Wisconsin. I had a chance to do some hill climbing along the river road which heads north from Cassville. I thought I was in the Rocky Mountains!

For lunch on Sunday we attended the fall festival of St. Charles Catholic Church in Cassville -- grilled chicken, fruit salad, corn, whipped potatoes, and homemade pie! There is something special about the festivals we have almost every summer weekend in small towns all over the Midwest!

We had a pizza delivered Sunday evening and watched a movie on the telly.


Monday morning we woke up early and did our second dialysis (without a hitch!). Then we packed everything up and returned to Mazomanie via some rolling county roads. It was another absolutely beautiful day.

On the way home, we explored some campsites and rock climbing areas in Governor Dodge State Park in nearby Dodgeville. I am joining my son, Peter, and his son, Ben, and Ben's other grandfather, Neil, for a "Rite of Passage" weekend beginning October 2 to celebrate Ben's coming of age (age 13!). The weekend is centered around some great cliffs which we all will be climbing and rappelling! (I had to bone up on some of my old Marine Corps skills! and, of course, procure the latest equipment.)

So here we are back at the cottage in Mazomanie doing our morning dialysis. The weekend was a great succcess and now gives us some courage to venture out farther away from home. We truly feel blessed by the great advances in our medical technology and the fact that Sabine's cancer has been "repressed."

We are also thankful that Sabine's fistula remains clear and functional. We meet with Dr Becker this Friday to begin the road to establishing a "mature" acccess point for dialysis (and one that will enable Sabine to fully shower again and swim!).

Our motto: CELEBRATE LIFE EVERY DAY!

Thanks to all of you who follow our journey, pray for us, and send us your love and support -- we couldn't do it without you!

Reflecting

Sabine's artery and vein connection still continues to function (a strong "bruit!"). If it wasn't for the dialysis, it would seem like we have a very normal life right now. How things have changed since those day days earlier this year.

This coming weekend we are going on a "trial run" for three days with our dialysis machine. We will be at a bed and breakfast and motel in the Dubuque, IA area for our experiment.

All this sounds so easy now, but deep down in the back of my mind there is always the wariness; watching for danger, remembering that all this could quickly end and we could go back into a medical crisis with this cancer.

I want to live in this moment. Not to fret. To thank God for everyday we have together and not to spoil it by worrying about things I can't control.

Over the years, I have watched a pair of swans return to a pond just south of us. This year only one returned. A poem began to form within me and I now share it with you...

each year we see them

two swans

on the pond south of us

we look for their faithful

arrival each year

a couple

each year

they mate and hatch a young or two

the chicks never seem to make it

they are gone

much too soon

and yet

each year we see them

faithfully arrive

but this year

only one has settled on the pond

he swims and

nests across from where

they made their home

not approaching that sacred place

will he be back next year?

to visit these memories of their youth?

to see their nest again

now but a remnant

in the changing landscape

of these breathtaking

hills and valleys?

God's blessings to all of you!

We think we have success!

Yesterday, we arrived at the UW Hospital bright and early. We talked with the anesthesiologist about Sabine's nausea problems when we were here last time and he made some corrections.

The surgery took about an hour and when I talked with Dr Becker she was excited about finding a good vein near Sabine's wrist and being able to make a good "hookup." (That means we woill not have to have another surgery if this one is successful!).




We checked the bruit (pulse) before we left the hospital and it sounded strong. I checked it a few hours later and at bedtime and it still was pounding away.

The key came this morning. I somewhat hesitantly reached for the stethoscope and listened to her wrist -- aha! There it was -- a strong bruit!
Hallelujah!

We took a walk this afternoon in one of our parks in Mazomanie and ran across this beautiful stream. Sabine has a sling to stabilize her arm so that we do not disturb Dr Becker's fine work.

Thanks so much for all your concern, support, good thoughts and prayers!

It's a good week....

It's Working!

Sabine said that if she got a good report from Dr Sheehan this week she was going to give him a big hug.

The report yesterday was very good and Dr Sheehan said he was "very pleased" with Sabine's progress.

The lambda light chains stayed in the low 200's and Sabine has another eight weeks off chemotherapy. Yes, the report was good and as you can see by the picture, Dr Sheehan got a big hug!

After our meeting with Dr Sheehan we went over to the clinic and , at Dr Sheehan's recommendation, Sabine received an infusion of a biphosphate to strengthen her bones and bind up some of the calcium that the cancer often produces. Her calcium level is a little high and this will put it in range of what Dr Sheehan wants to see. She is also on a small amount of blood pressure medication (metropolol) that keeps the blood pressure in a good range.

This coming Monday we go for the second attempt at connecting a fistula in Sabine's arm (see earlier blogs for what that entails). And we will be nursing Sabine's delicate arm for three days at the cottage next week.

Yesterday, after the good news, we had celebratory lunch at the General Store in Spring Green and then visited a fabulous place that some of our friends had been encouraging us to go -- The Global View (future website at www.globalviewintl.com)

Marion, who has travelled to Asia for over thirty years is committed to maintaining a personal relationship with Asian artisans, hand selects articles, understands the lives of the people who produce quality items, and helps to keep traditional cottage industries alive.

Global View's artisan work is housed in a huge barn overlooking the Wisconsin River valley. They are just 7 miles west of Taliesin on County Highway C (turn south on Clyde Road and look for the sign about .7 mile from Highway C).

Many of the artifacts come from both Hindu and Buddhist traditions. I have always admired the depiction of the Hindu god, Shiva, because, as you will notice, he is dancing on the back of a sleeping human. Now, isn't that just like us? We doze and sleep, unassuming, while the mystical presence dances on our backs!

If you are ever in the Spring Green area, this is a place worth visiting.

So Sabine has had a great summer -- it will be 24 weeks without chemotherapy. She has been able to be active, run and cycle and take some short day trips. We continue to participate in our myeloma support group and help others who are newly-diagnosed and receive support from those who have been on the cancer journey longer than we have.


We continue the celebration tonight when we go back to Spring Green for a "sing-a-long" to the movie "Mama Mia." And we're putting on our dancin' shoes!

We are eternally thankful for where we are today versus where we were when this blog began -- being both awake and thankful is an important part of our journey. Thanks for all your love, prayers and positive imaging -- we couldn't have done it without you and the Almighty!