Friday, February 27, 2009

Proceeding Forward

After this crazy week, we are slowing down and enjoying this day. Last night it rained! and turned into slush -- but we still presented week #2 of the Marriage Course at the Lutheran Church here in Mazomanie and most of the couples braved the ill weather.

On Wednesday we visited with Dr Sheehan and we are beginning a series of tests to see if Sabine is an eligible candidate for a stem cell transplant. It will be a slow, but progressive, process.

We are going to celebrate the week's ending tonight by attending a ballroom dance workshop in nearby Mt Horeb. (Confidentially, I want to spirit her away to a steamy music hall in Argentina and tango!).

Tuesday, February 24, 2009

Successful Surgery!

Sabine went into the hospital yesterday in order for the surgeons to take a look at her fistula hookup that was causing some swelling in her arm and chest area. As even a medical layperson like me can see in the enclosed x-ray, those veins looked a little swelled up. They needed to do this to make sure that the fistula will work in the future when we start to use it (after the impending stem cell transplant).

The docs went in and found all this backing up of the blood flow and after a few attempts with wires, were able to use a laser to open up the vein. While they were doing this they also replaced Sabine's tunnel catheter (which was over a year old and could have caused future problems. And, as you can see on the second x-ray photo, things look a lot better and less constricted and "ballooned." (see below).

So after about three hours of surgery she came back to the recovery room, ate some food and we headed home. It was a tiring, but successful day thanks to the fine work of Drs. Yevzlin and Chan!

Sabine got a good night's sleep despite the new holes and stitches in her body.

This morning we used the new catheter for dialysis and while I was a little wary as to how it would work it turned out just fine and we got some very low pressure readings (good) as we began the procedure.

This afternoon we have our monthly clinic appointment at the dialysis center in Madison and then tomorrow we meet with Dr Sheehan and perhaps will discuss the next steps we have to take on the stem cell journey. While this procedure is really scary it will hopefully and prayerfully give Sabine a longer time between chemotherapies. If all goes well, and the transplant takes, she could go a year or more without chemotherapy and give her a higher quality of life plus some longevity. Your prayers for a successful cell transplant will be greatly appreciated!

This is from the Multiple Myeloma Research Foundation website:

"Autologous stem cell transplants refer to stem cells that are collected from an individual and given back to that same individual. Autologous transplants are also referred to as autografts and are by far the most common type of transplant performed in myeloma patients today. With this type of transplant, the patient's stem cells are obtained prior to high-dose chemotherapy, frozen, and stored if necessary, and are then given back afterward.

"Several studies have shown that high-dose chemotherapy with autologous stem cell transplantation improves the response rate, event-free survival and overall survival in myeloma over that obtained with conventional chemotherapy..."

You can

Friday, February 20, 2009

Weather Forecast: Storms Approaching

This is one of our intense medical weeks – a referral to a colleague who works with Dr Sheehan, a meeting with folks at the Access Clinic about the next-step surgery Sabine needs to get her fistula working… but now, with Dr Longho, we hear another possibility – a stem cell transplant – which is a long process of intense chemotherapy to knock out the cancer and then a process of harvesting Sabine’s own stem cells and re-infusing her with them.

It may not sound so bad, but we have heard about the stem cell transplant process (some good, some bad) from some of the members of our support group. It is a scary and somewhat dangerous process.

Nevertheless, what Sabine would gain from a successful stem cell transplant would be a period of time (one or two years or more) in which she would not have to take the debilitating chemotherapy drugs (various chemotherapies eventually lose their efficacy).

A stem cell transplant should improve her longevity and, at the same time, keep up her quality of life. In order to become a candidate for this procedure, a number of tests will be undertaken along with establishing a baseline for her cancer. It’s her decision what to do and my job to support her decision.

I have a feeling that we are going to be entering some tough times in the months ahead. Sabine will have to put off the vein/fistula procedure until she recovers from the stem cell transplant (which generally takes about three months for a full recovery). We met with the access clinic today and they confirmed that the vein/artery hookup would not be compromised by waiting three to six months.

This new round of chemotherapy will cause Sabine to loose all her hair again. I’m thinking “redhead” this time! The downside is that she will be very sick as her white blood cells drop along with her immune system. She will have to be in isolation for a while and be very susceptible to infections. In between all this, we will have to keep the cancer from getting aggressive… and Sabine will have to continue five dialysis sessions a week.

Dr Longho also talked to us about kidney transplants and said that kidney transplant patients have to undergo a lifetime of drug therapy to prevent rejection of the new kidney. In Sabine’s case, those drugs would compromise the drugs necessary to control her cancer -- therefore eliminating the possibility of this course of action in the future.

Yesterday, after meeting with Dr Longho, and presenting hearing about our next course of action, I can’t help but feel the uneasiness and worry (oftentimes, terror) that I felt a year ago when Sabine was first diagnosed.

Maybe it’s the fact that we have had a wonderful ten months without chemical intervention and wanting (again) to “freeze-frame” the good times. As Sabine said this summer, “If it wasn’t for the dialysis, I would have forgotten that I had cancer!”

Today, reminded me that the cancer has not forgotten us… So, we saddle up again and prepare to move out… The poem I wrote below captures the feelings I have…

the restlessness

it slowly begins

as we contemplate

a change

a “modification” of

the program

why can’t it stay just like it is?

why the changes?

why the modifications?

we were holding a course

a comfortable one

and now

there’s this new thing

this new assault

on our deadly disease

we’ve been in “r and r”

(that’s “rest and relaxation”)

for these long months

and now

the front lines still are there

we’d almost forgotten about them

now they call us to forward

the engagement unavoidable

the hand-to-hand combat


a deadly wrestling match

with cancer

it does not cower

nor easily yields


it beckons

come, it says

such mocking words

are you up to

the match, you two?

it’s to the death

you know?

Thursday, February 12, 2009

Pictures from Sunny Florida

A view from the pier at St Augustine Beach -- look's warm doesn't it? You're wrong! It was about 25 degrees and we had frost on our windows! (Florida is like Wisconsin, just wait a bit and the weather will change). As we drove south along the ocean it quickly rose to the high 60s. Two days later it was in the 80s. We saw whales migrating north along the coastal waters between Daytona and St Augustine.

Dinner at Vistana on Hutchinson Beach -- joined by daughter Sumi, husband Scott and daughter Taylor (18 mos), and daughter, Yumi, who was enroute to her new Army assignment in upstate New York. Also present was Sabine's brother, Rainer and his wife, Rannae from the Vegas area.

During our daily dialysis Sabine was often joined by the girls in bed.

Grabbing an early Valentine's Day kiss on Hutchinson Beach where we did our morning walk/runs.

At Archie's Seabreeze Bar and Grill (where we attended morning worship on Sunday), Sabine found this guy who invited her to join a gang of buccaneers. Even though this guy was quite the "looker" he wasn't dialysis-qualified like I was. Sorry, Captain Hook! Another time!

Tuesday, February 10, 2009

Beachin' it!

We left Mazomanie on Wednesday with the temperature at -2 degrees. We had packed up the camper with all our personal and medical gear and headed south. We drove all day long until we reached Kentucky (the outside temperature was still in a single digit!

After camping near the Ohio River we headed out. We drove all the second day to St Augustine, FL, where we sought a KOA campground to be sure we had some hot showers and electricity.

When we got to Hutchinson Beach on the east coast, we were joined by daughter Sumi and her husband, Scott and daughter, Taylor. Yumi also joined us as she was able to take a break in her cross-country travel to her new base in northern New York state. Then Sabine's brother, Rainer, and his wife also joined us. Thankfully, we had two units and could house everyone.

I forgot to take the download cord for my digital camera so I had to find a picture for you on the Internet.

On Sunday we attended a great church community that met in a tiki bar and had a breakfast buffet! I have a video that I will download next week. In the meantime, this is from an article in one of the local papers:

Archie's on Hutchinson Island serves casual church service at Sunday breakfast

BY TONYA MAY Correspondent

Tuesday, April 15, 2008

HUTCHINSON ISLAND — Picture a religious service where parishioners can arrive barefoot, munch on food and shout their favorite hymn requests to the pastor. And instead of being in the halls of a church, the service is in an island-style beach bar.

The Crossing Church has a weekly Sunday church service at Archie's Sea Breeze. Churchgoers — sometimes more than 100 each Sunday — from children to the elderly hear a Christian non- denominational service from Pastor Dave Sheil in an atmosphere so casual the pastor shows up in a tie-dyed shirt, and churchgoers hear a sermon over breakfast.

Jensen Beach resident Cheryl Ferrari attends church with several co-workers from the Martin County Property Appraiser's Office. Ferrari has been attending the church for about two years.

"This is such a great atmosphere where you can worship and meet all walks of life," Ferrari said. "My husband wouldn't go to church but attends here because of the 'no shirt, no shoes, and it's OK' policy."

The Crossing, which has services in three locations including Archie's, even has a Sunday school lesson. Children of all ages are given a hands-on craft to do and also learn a lesson in a back room.

The program began with Sheil. He wanted to start an outreach ministry that connected with what he called the "subculture" — people who don't attend traditional services or church at all.

Originally, he planned to do this at a trailer park, but hurricanes the past few years destroyed that preferred setting. So he contacted Archie's Sea Breeze. That was more than two years ago.

Sheil counsels at Safe Harbor for Men, an outpatient substance abuse group, has personal counseling sessions and owns his own custom sign business.

"I don't shove Jesus down anybody's throat. I will not beat people up with religion. They do not know how much I know until they know how much I care," Sheil said.

Now I don't know about you, but when we all attended this Sunday morning worship service at a seaside bar and grill, I had the distinct feeling that this was what church is all about --- I felt that this is the kind of place and faith Jesus talked about... In fact, I sensed he was here with us enjoying those scrambled eggs as much as he did the breaking of the bread...

Emerging faith... wake up... be prepared to be astounded by God!


Sunday, February 1, 2009

A Celebration

we whistled through the
spring summer and fall
walking through the graveyard
ignoring the stones
choosing to see
the grassy smells trees
chirping birds
now our walk’s about to take
a turn
more chemo they say
as we step up again
to challenge
this thing still silently
while all summer long
we played skipped along
(tick tock tick tock)
cheating death
a glorious whole sweet again
(tick tock tick tock)