Thursday, February 8, 2018

Out of Sight - Out of Mind!

Finally, after two years we are back on our snowshoes! Bring it on!
Last month we began our 10th year since diagnosis (most of that journey is posted within this blog!) There have been ups and downs, times of terror, times of joy — “the best of times and the worst of times” and yet she is still here sitting next to me yesterday during our three-week cycle of a day-log immunotherapy infusion at the Carbone Cancer Clinic at the University of Wisconsin Hospital.

This is progress! And these “extra years” something of which I will be eternally thankful.

Ten years ago we had the blood cancer diagnosis... two deer in the headlights! We not only had a blood cancer in which to struggle and manage (Multiple Myeloma) but also kidney failure as a result of the cancer. And that meant dialysis five days a week (thankfully we were able to do home hemodialysis after a number of surgeries to establish a fistula). This gave us some flexibility in our life as I shifted into being a medical provider along with being a caregiver, pastor, author, police blogger, and now part-time college professor!

These activities and duties kept me somewhat safe and sound over these years.

So yesterday, we were in Dr. John Sheehan’s at the clinic awaiting our check-up and infusion. The infusion is a day-long event of labs, doctor’s visit, and IV immunotherapy (daratumumab).

Sabine’s mother is in a nearby nursing home and our youngest son and his “SO” and baby are residing in the “hill house” next to our farmhouse.

What kind of life is this? A full and rewarding one! We human persons are adaptable, flexible and with a positive, faith-based orientation can take just about anything and still thrive and be thankful. That’s the truth. We've lived it!

So, being “out of sight and out of mind” this past year has been a good sign from us. After all, when this started I was told that Sabine had about two years to live. That’s eight extra years! Such a wonderful gift!

Tuesday, January 9, 2018

Update for 2017












Oh, my gosh! Where did the year go? My last post here was last FEBRUARY! As I have always said, "No news is good news!" And so it was true for 2017 and now as we start our TENTH year since diagnosis.

For most of last year, and thanks to the miracle immunotherapy drug, Daratumumab, Sabine has maintained low cancer numbers with an all-day infusion in the clinic and a shot of Velcade plus the ever-present therapeutical dexamethasone.

For a quick update, here's our family Christmas newsletter:

A New Journey Farm Letter: Christmas 2017
From the beautiful, unglaciated region of Blue Mounds and Southwestern Wisconsin


David, Sabine, and their new Labradoodle,
Mocha, Too (2)hiking at Blue Mounds State Park.
A Slippery Beginning
2017, a year of changes, yet great fun! The year started out a bit rocky with Sabine slipping on an icy driveway and breaking her hip in two places. But every cloud does have a silver lining, and it was Brother Rainer coming to the rescue and helping out for three whole weeks. Between cooking and building disability equipment, so Sabine could negotiate the stairs and get to the dialysis machine, she made a wonderful recovery. Unfortunately, their two donkeys were too much for them to handle, but they found a new home for “the boys” in a farm just west of them.

New Residents
Once Rainer left, son Josh, Rachel, and newborn Alex, moved into Charlotte’s home to help out. Charlotte had been diagnosed as having dementia last year and their presence made life a lot easier for everyone.
 
The Cousins at Malani's baptism:
[clockwise] Malani, Malea,
Seger, Alex, and Taylor.
Preaching and Teaching Justice
David and Sabine have continued to serve at St. Peter’s in North Lake (for 12 years now!) and enjoyed a moving church season of Lent which included trips to a Hindu temple, a Jewish synagogue, and an Islamic center. It was an enlightening experience and reminded them how connected we all are to one another. Yes, diversity is both a strength and blessing. David has continued to teach both freshmen and seniors at UW-Platteville (a 40-minute drive west of Blue Mounds) by introducing them to our nation’s system of criminal justice, how it might be improved, and a seminar in police transformational leadership. The proximity to Dubuque also permitted them to spend even more time on Kokomo. They wish each one of you a blessed Holy-day!

Charlotte ("Buddy") at Malani's
baptism, David presiding, at
Barneveld Lutheran Church.
Buddy’s Journey
In the summer, Charlotte fell and broke her leg and had to move to Ingleside in nearby Mt. Horeb for rehab. The fall and rehab also advanced her dementia and she now resides there fulltime. Josh, Rachel and little Alex continued to stay at her house to keep things maintained and farm-like. As a result, 37 free-range chickens (my girls!) and three goats have taken up residence.

An Unwelcome Loss, and a Welcomed Addition
Fall brought us heartache with the death of David and Sabine’s 14-year old dog, Mocha Latte. It was a time of much grief for both of them. So, seeking recovery, they were moved to adopt a new puppy; a Labradoodle named “Mocha, Too!” While all three of them attend puppy school in nearby Dodgeville, they found that raising a puppy is not as easy as they thought it would be.

Family Visits (Here and There)
New Journey Farm was blessed to have visits this year from sister Barb and husband Ken, daughter Sumi, Scott and Taylor, other granddaughters Heather, Gracie, and her mother, Heather, and niece Teak, kids Seger and Malea. Daughter Sarah and Joseph live fairly close and are always welcome guests. These are always great adventures for everyone. (Did I hear “bowling?”)

Daughter Yumi, Malani, and
husband, Matt.
Another Addition
Other than short trips on the mighty Kokomo, David and Sabine managed two others by airplane and automobile: by air to meet their newest granddaughter, Malani, in San Antonio (and parents Yumi and Matt), and by road to Teak and Kelly’s home in Kirksville, Missouri, for what they called “a redneck Thanksgiving!” Such a gathering involved trap shooting, disc golf, a hayride, delicious meals, and a trip to their neighbor’s winery. More than enough family fun to spread around.

An Epitaph
I am usually up by 3:30 a.m. most mornings exercising my fine voice. So, I hear David and Sabine often chatting as they walk up for dialysis (oh, did I wake you?). They say it is so wonderful to live here on this farm which gives them trails, woods, sun and sky along with enjoying world-class thespians from the American Players Theater in Spring  Every morning, I hear them say, “it’s a wonderful life, isn’t it?” And they wouldn’t give up any of their family members, friends or church community. They say they have been blessed by prayers and good thoughts from many of you and are pleased to report that, so far, excellent medical care has enable Sabine and David to enter the 10th year of cancer – still crazy in love!
The Editor, her two kids, and
chicken friends.
Green, boating on the Mighty Mississippi, and hot tubbing under stars and falling snow.


Ed. Note: This year’s editor was New Journey Farm’s late, great, “Roaster Rooster.” He who penned this letter last night just before he entered their new “Chicken-Plucker,” the Grand Poultry Palace -- and then, deep freezer! -- R.I.P.]

Wednesday, February 8, 2017

Could Spring Be Just Ahead?

On Monday of this week we went into UW Hospital for what was to be 16 hour infusion of the new immunotherapy drug that is the mainstay of the new treatment regimen. The good news is that we got out of there in only 12 hours -- and no side effects to speak of. (The long infusion rate is to closely monitor Sabine's reaction to the new drug.

We go back tomorrow for a short sub-cutaneous injection of Velcade (plus a lot of oral dexamethasone).

We do this routine for three weeks and then check on the results.

In the meantime, home dialysis is going well and we are back in our special room as Sabine has become more mobile now. She is in her 5th week of OT and PT and healing.

This morning she put on her Yak-Tracks (crampons) and WALKED up the hill to Buddy's house! A great achievement -- no walker, no cane!

Josh, Rachel and Alex have moved into Buddy's place and provide peace of mind so Sabine and I don't worry quite as much about her. I guess it would be safe to say that Buddy is "winding down" as she approaches her 93rd year. The donkeys have gone to a neighbor's place and her memory is very short-term, sleeping a lot, but up once and a will to hold baby Alex and even to join them for dinner.

The weather of course has been insane. Rain, slush, freezing, re-freezing and swinging temperatures. I think of spring and boating but know it is some weeks away.

I have a great class of seniors at the University. We are engaging in building a class together on "Police Leadership in Changing Times," A most current and relevant topic.

Peace and thanks for your concerns, thoughts and prayers.

Wednesday, January 25, 2017

Changing the Drug Strategy


Snow today. OT and PT continue with good results. Sabine is able to actually walk with the aid of a walker and no longer has to shuffle her feet. While she continues to sleep at Buddy's house she is able to transverse the stairs each day down to our dialysis room.

Brother Rainer is sill with us and helping out with chores and cooking. He used his carpentry skills to install special railings so his lovely sister can get up and down the basement stairs.

Thanks to everyone who has furnished some great meals for us.

Spring semester started yesterday at UW-Platteville and all went well with my new class, "Police Leadership in Changing Times."

Today we went down to the clinic through some heavy wet snow (thanks to our FWD truck which performed heroically!). Transferring Sabine to the truck worked out -- it's a big step up.

At our meeting with SABINE's oncologist, Dr Sheehan, he proposed we take a new tack on the cancer by moving from CHEMOTHERAPY to IMMUNOTHERAPY by using a new drug called DARATUMUBAB. He is doing this because the present approach is losing its effectiveness and not repressing the cancer as well as we all hoped. Thankfully, we continue to have treatment options as we start our ninth year since diagnosis.

It will be a weekly infusion of the immunotherapy drug (the first one is scheduled for an all-day infusion) plus a sub-cutaneous injection of VELLCADE that same day plus a second shot of VELCADE clinic visit during the week. This regimen will also involve oral DEXAMETHASONE.


HOW DOES DARATUMUMAB (DARZALEX® ) WORK?


  • DARZALEX® is not chemotherapy. DARZALEX® is a monoclonal antibody that works with your immune system. Monoclonal antibodies work by attaching themselves to multiple myeloma cells in your body and directly killing them, and/or signaling your immune system to destroy them
  • DARZALEX® finds and attaches to a protein called CD38, which is present on the surface of cells, including high numbers on myeloma cells.
Okay. Here we go. New drugs. A healing pelvis

Saturday, January 21, 2017

The Iceman Cometh

The Iceman Cometh

Rural living for most of the weeks of the year is a delight – but not all weeks – like the last two and the ice storm and one-inch coating of ice on the ground – and driveway. Thankfully, my Yak Traks (shoe spikes) came to the rescue.

First Sabine fell, broke her hip,  and was hospitalized for a week. Then we had to cancel chemo for a week. Then Rainer came (and fell but thankfully was not injured!). Then the delivery man of our dialysis fell and could not get up the driveway so we off-loaded the 50+ boxes near the barn. To the rescue came Rainer and neighbor Bob we carried them into the basement.

Yes, there’s more… I parked the Sonata up the driveway to make room for the dialysis truck who was unable to get up Buddy’s driveway. It was cold when I parked the car. Then the sun came out and melted some the the ice and the unoccupied car slid down the hill and hit a donkey pen post and just about totaled the front end.

Then we were supposed to get a prescription for her pain relief which is necessary because the treatment for a broken hip that is not separated is to put pressure on it through the leg. And one cannot do this unless something is done to mask the incredible pain this will cause. Well, thanks to widespread opiate addiction today most providers will not fill a weekend prescription. I took me most of the day and numerous phone calls to get through to a medical practitioner who would fill the prescription. Finally, a doc on call for  Dr Sheehan came to the rescue. What’s the learning? We are responsible for our own medical care and beware of the “silos” (medical disciplines) who have difficulty communicating with one another.

And it rained and rained and froze and froze. Finally, in desperation we called our township office and they came to the rescue with sand and salt and the ice began to melt.

Buddy continues to be up and down (sometimes in bed for 2-3 days) with a growing loss of her memory. This means no donkey lady to do the chores and so that task has been on our agenda as well. (We are in conversation with a family which is looking to  adopt the boys because it’s become simply too much!)

Neighbors and church family have come to the food rescue. Much appreciated!

We are looking forward to a more normality this coming week (chemo on Wed and Thurs, a meeting with Sabine’s oncologist, Dr. Sheehan, and sessions with her occupational and physical therapists.






Monday, January 9, 2017

Recovering Back Home

Sabine is all set now in her mom's house in the upstairs bedroom (the dialysis equipment has also been moved there.) She still is experiencing a lot of pain in movement. We did dialysis yesterday afternoon and all went well in the new location (after all, we've dialyzed on a boat, train, and mile-high lodge in Glacier!).

She is scheduled for OT and PT today and we are hoping we can get her moving with less pain given we have a chemo infusion on Wednesday and Thursday at the hospital in Madison.

Brother Rainer is here (I picked him up at the Rockford Airport after church) and helping out with Charlotte and his sister. Josh, Rachel and little Alex came out yesterday as well. Nearby friends Jeff and Bonnie brought food last night.

So... one step (literally) at a time.

And, yes, above all things -- it could have been worse!

Stay tuned.
Wedding Day -- December 29, 1981, outside Brookings, So. Dak.
on the way back to Northfields.

Saturday, January 7, 2017

Semester Break!

I simply could not refrain from joking about Sabine falling and fracturing her hip during my "semester break!" Ho-ho, funny guy.

We were discharged from UW-Hospital after a 4-day stay yesterday afternoon. (While we were at the hospital we did dialysis two times in the hospital clinic where I was permitted to cannulate her needles and take her off the machine -- much thanks to the supportive professionals there.)

Sabine also received her weekly chemo infusion in her room after much discussion and delays.

Nevertheless, here is an update -- we are back home and I have positioned Sabine in her mom's house (where we dialyze) for mobility purposes. Our home has lots of steps from the driveway to our front door.

Now the program is about mobility and accessibility. She will mainly be in her mom's house except for two major transfers next week to the chemo clinic on Wednesday and Thursday. That will be a major undertaking as Sabine continues to experience "level 8" pain whenever she moves. Mr. Oxycotine is available and she has been advised to keep him in her system to mask the pain that will be part of her healing journey -- she is to MOVE as much as possible with weight on her pelvis. Hmmm - but that's what the professionals have prescribed.

While this is a set-back, I continue to reframe it as a blessing. She did not have to have surgery, she did not hit her head when she fell and could have gotten a brain bleed, and she did not fracture her "golden arm" (the one with the fistula for her dialysis).

Home health in nearby Dodgeville has already scheduled her for occupational and physical therapy on Monday and I am going to pick up her brother, Rainer, from the airport on Sunday. Rainer offered to come and help out as a member of the dual-care team: Sabine and her mother, Charlotte.

As many of you know, Charlotte, age 92, is experiencing a growing memory loss due to dementia. She doesn't know what happened, cannot remember the ambulance coming to the farm on Tuesday, nor any other events that have happened over 5 minutes ago.

However, her health is good and she maintains a positive attitude and is always ready to help when asked. But she can no longer live independently and depends on us for daily care.

I want to thank all of you who have offered to help out and brought meals for us. Your love and care is greatly appreciated. I promise that if we need help, we will ask. For example, friend Jeff, who lives nearby, helped out the other night when I stayed with Sabine at the hospital with feeding the donkeys (who greatly miss their daily interaction with Charlotte.

Peace. Healing. And a blessed New Year for all of us!