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.


  • 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!

Wednesday, January 4, 2017

Oh No! Not Again!

Bad weather. Rain and ice. Dangerous walking. We were at the UW Hospital earlier to today for a fistulagram and headed home around 3:00 p.m. We parked under the shelter and Sabine took some groceries into the house.

I said I was going to chore the donkeys and she was to drive the car down to the farmhouse because of the icy driveway conditions.

For some reason (the drugs she received for the fistulagram?) she decided to walk down the driveway when I heard her scream...


9-1-1 time and I think the 3rd time the Barneveld ambulance team made a visit to New Journey Farm.

Sabine was conveyed to the ER at UW Hospital and that's where we are right now.

Preliminary diagnosis was a hip fracture, but now they want to take more X-rays and possible a CT scan to see what's going on. She is now on a dilaudid drip and more exams coming.

Looks like she will be admitted and we will have to coordinate dialysis at the hospital in the morning and her chemo regimen in the afternoon.

Buddy and Helene are at the farm but it looks like we will have to have some help with her when Helene leaves for Stevens Point.

This is a big setback.

I know you are all concerned and I will keep you updated on this blogsite.

Keep us all in prayer.