Christmas Newsletter -- 2016

Ed. Note: Hard to believe, yet wonderful to experience, we are entering our ninth year of managing/controlling/wrestling with CANCER. A good way to let those who are following this blog know what's been going on with Sabine and her gang is for me to post our annual Christmas newsletter.

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 Christmas News - 2016! 

From New Journey Farm in Beautiful Blue Mounds 

By David Couper & Sabine Lobitz 

Sabine relaxing with her morning
coffee on the Mississippi with
trusty companions Mocha
and David.

A Merry Christmas and a very Happy New Year to come to all our friends and family. This was one of those years which brought with it both hard and amazing times. The hard times began with the establishment of a “new normal” as Sabine’s cancer showed some progression. Having been literally spoiled for years of stability and oral chemotherapies, Sabine found it difficult to participate in many of her usual activities like cycling, kayaking and disc golf to name a few.

Veteran's For Police Memorial
 Day Reflection 

Alexander, parents, godparents
and priest.

Through this adjustment back to IV infusion chemo two times a week at the hospital, David was still able to teach for the second year at UW-Platteville, preach at St. Peter’s, helped organize a regional policing conference, and, through his popular blog, to help coach and lead police improvement with regard to recent officer-involved shootings, and the resultant diminishing support and trust for police among people of color.

Cap'n Dave and his crew: Sabine,
Heather H., Gracie, and Heather R.
at the Dubuque Boat Parade.

Still they were able to make it out to the American Players Theater in nearby Spring Green for a great summer season as well as attend performances in Platteville and Dubuque. Most of their “off-time” (read: home dialysis, support groups, chemotherapies, lab and doctor visits) was spent on the good ship Kokomo at the Port of Dubuque. 

Their church gave them some great volunteer opportunities and many blessings. They had visits from granddaughter Gracie and her mom who live in San Diego, and also a summer visit from granddaughter Heather from Michigan. They joined together for the annual Dubuque boat parade. They also had a visit from daughter Yumi and her longtime friend Jessica which was followed by Sabine’s cousin, Helmut, from Montana who had recently lost his wife. Cousin Helene has been down from Stevens Point nearly every month to visit Sabine’s mom, Charlotte, and to help out. (We hear it’s been a big treat!). 

Old Dogs at University High School's
60th Reunion.

Other visitors we’ve seen come and go are Sabine’s brother, Rainer, her sister, Barbara, and cousin Teak and her gang along with daughter Sumi, Scott and Taylor. 

We also overheard (our ears are super-sensitive) that David was able to attend his high school’s 60th reunion in the Twin Cities. He stayed in a wonderful refurbished inn on Nicollet Island, in a building he once took homeless people to when he was a cop in Minneapolis. 

Alexander Wolf Ransom-Couper
August 12, 2016

But there is bigger news ahead: another grandchild, Alexander Wolf Ransom-Couper, came into the world by way of son Joshua and Rachel. (Just in the nick of time as they needed to have a Holy Family for Christmas Eve at St. Peter’s.) He is an amazing youngster! Then (as if all this news was not enough for our little ears), daughter Yumi (still an officer in the Army) and Matt are expecting! More yet: and granddaughter Hannah is getting married just before Christmas in Minnesota. Just when you think things are dull and routine, this family kicks in with new adventures and new members! 

At the Dubuque Art Museum
Benefit

From our earthy prospective, no matter how difficult some aspects of life may seem, the wonder of it all is enough to take your breath away. Open up and breathe! And on behalf of those who live above us and their friends and family, follow the Star, do good, be alert, press on, and work for justice. 

A very Merry Christmas and Happy New Year from those of us under and above ground! 

The New Journey Farm Moles 

A note: “Although your ravaged lawn makes it look as though a whole family of moles has moved in, it only takes a single mole to create tunnels and mounds over a wide area; Moles are demolition masters. Surface tunnels are what you see when you are fighting moles, but in reality they are a small slice of the architecture of a mole’s home. Often, the tunnels are dotted with huge mounds of dirt in order to make a nice tunnel.” 

Still Struggling to Normalize

Yesterday, Sabine went in for her second chemo infusion this week (carfilzomib) and with platelets and some other blood chemistry tests being low, she had to receive 2 units of whole blood. After the chemo infusion, we left the clinic at around 7:30 p.m. Whew!

But a stop at our favorite local Chinese restaurant (Imperial Gardens) perked her up. Juggling 5 hemodialysis sessions a week with two runs to the clinic at UW Hospital for IV infusions sort of fills the week up along with the normal fall chores of getting ready for winter on the farm, and her mother's failing memory -- it's challenge.

Although she is pretty tired (8.0 hemoglobin), she continues to have a positive attitude with daily exercise and coveted naps in the afternoon.

We still have our boat in the water (we try to be the last one out in early November)

and we are looking forward to enjoying some overnights on the Mississippi.

In January, we begin our 9th year managing this thing called "cancer."

________

A Poem on a Walk

for 8 years now

we've pursued

normal

while blood-washing

and

chemicals become

your/our life

mutations and permutations have

been partners

in our life

together 

but they do not

dominate

yet

as we continue

our morning walks 

(after coffee,

of course)

up the hill 

i see a

some kind of 

shadow

hovering

an illusion?

private and primitive 

it hangs around

wispy

fog-like

shoo

my arm passes

through

go somewhere

else

get out of

here

us

find another

another what?

another victim?

yes, i say

anything

anyone

but

us.

October and Recovering Platelets

I think we've got the new chemo and the "new normal" established enroute toward some stabilization. Sabine''s playlets have stopped plunging enabling the new chemo to kick in and get back on schedule. She has been pretty tired. We still get out for a daily walk.  There is some face-swelling that we cannot account for. But no neck pain and dialysis is going well.

The end of the boat season is quickly approaching yet October is one of our favorite times on the river.

Much of which to be thankful as we approach year nine.

Fistulagram

At UW Hospital today for a "root-router" of her veins to eliminate arm and face swelling. We have to do this no less than every three months. Due to Sabine's low platelet count she had to have a platelet transfusion prior to her surgery today. Dr Chan checked in and told me the procedure went well and "see you all in three months." All this still is worrisome because the swelling makes it difficult to put in the fistula needles. We'll see tomorrow how it goes and how the swelling has gone down.

How's Your Stress?

I sometimes imagine I have a stress gauge. Some people can tell when their blood pressure rises, for me, it's stress. After the last two weeks, I see the needle on my stress gauge slowing edging into the "red zone." I can't imagine what these past two weeks have been for Sabine!

It all started with her having a "pulled muscle" in her neck. Or so she thought. After two ER admissions and an MRI, a small mass was observed on her neck (cervical vertebrae) on her dura -- the sheath around her spinal cord. No, not good.

She was admitted to the hospital for a five days stint trying to figure out if it was an infection or plasmacytoma. The latter would be caused by her multiple myeloma.

Many doctor visits in the room. We did daily dialysis in hospital with me doing the procedure (that dropped Sabine's stress needle a lot -- at first, it was why she did not want to go to the hospital despite her growing neck pain!). She worried about how the dialysis would be done and would the hospital let me supervise. They did. That was good.

Then a PET scan calmed things down a bit because it showed only ONE cytoma on her neck and not an outburst (hot spots) in other parts of her body.

Then 5 successive radiation treatments on the C3/C4 area of her neck vertebrae.

Then a change in her chemotherapy protocol due to increasing cancer numbers and a dropping level of platelets.

Then a bone marrow biopsy (2 sticks) in order to get some bone marrow out of her pelvic region (yes, ouch, again). (A later report showed about 40% myeloma cells [we forget what the number was when we started] and no displace --  that is no other hematological problems in her blood. Very good news.)

The first day of the new treatment regimen also required us to go out to the new UW Hospital on Madison's eastside to get echo-grams of Sabine's heart and shoulder (the IV chemo has a history of causing some heart problems. I think the doc wanted to have a baseline for her as we begin this new treatment).

We have now switched from solely an oral treatment to pills plus hospital infusion. This means a monthly cycle of Thursday/Friday infusions with oral pills between. The new drugs are IV carfilzomib with oral dexamethasone and pomalidomide. (While the other drugs are well-covered with manageable co-pays, Medicare covers 95% of the pomalidomide. That's 95% of $14,000 per week. We pay the remaining 5%.)

On top of all this, I was signed up to teach fall semester at Platteville! And next week is our annual policing conference on campus. Yes, red zone, red zone!

Writing about this after a fairly quiet weekend in which we went out to dinner. Thursday night Sabine wanted to attend the APT play, "Arcadia," in Spring Green. We made it through the first act. And on Saturday we attended a faculty picnic and football game in Platteville things don't seem quite as bad.

Along with some exercise every day, Sabine wishes to be active. That's how she manages.

Also, as people of faith, our church family has been a great source of prayer and support. They have been with us now from the beginning! For that we are deeply thankful.

I guess it's a combination of deep-breathing, thinking "carpe diem," and re-framing a new protocol. A fellow faculty member took my Thursday class so I could see how the new chemo infusion went. It thankfully went well!

That's my report from the trench. It's a little deeper, but looking better.

We decided, yes, we can do this!

Stay tuned... (prayer welcomed!)

Very similar to the trench I was in for the last two weeks! Where was Sabine? I think she was in the barbed wire!

Our trusty "Vein Team" at UW Hospital using an echogram to find Sabine's illusive veins so we can start the infusion. Yes, they got it!

Taking a break and climbing out of the trench for a few hours at the UW-Platteville vs. St Francis football game in Platteville.

Hey, just like a Badger game but no crowds and everyone seemed sober! Big marching band, flag team, cheerleaders and "Platteville Pete" (watch out Bucky!)

Big Week Ahead

Dr Sheehan called and told us Sabine's "numbers" were up and that he wanted to see a bone marrow biopsy. So, on Wednesday we go for that and a meeting with his Nurse Practitioner (Dr Sheehan will be on vacation for a week).

Additionally, we will have to stop the elotuzumib
 and go for different chemo that will involve two IV infusion days each week (on Thursdays and Fridays).

So, a big week ahead. I start teaching and we are at the hospital for three days this week.

Prayers and good vibrations needed.

Infusion Day

Today is our 3rd hospital infusion. A long day that began at 6:30 a.m. with a drive to UW Hospital, lab work before the chemo is infused and the a four or more hour infusion process. As always, a special team is needed to find a vein to begin the process.

Nevertheless, we try and make "lemonade." I do some internet work for my blog and this coming semester at UW-Platteville. And then there is one of our more popular lunch restaurants a short walk away [I'm the mobile one] called "The Sushi Box."

The reason for Sabine's tiredness and lack of energy this past weeks was revealed in her hemoglobin count 8.2! The good news is that her platelets have increased to sixty-four [they were in the forties last week].

Hoping to make it home by 5 p.m.

One day at a time.

Infusion Day (Round Two)

So here we are again at University Hospital Cancer Center. Sabine still has a low platelet count but we met earlier with Dr Sheehan and he decided to proceed for infusion #2 and discontinue the oral chemo until next week. So far, so good -- get that new immunotherapy drug attacking those wayward blood cells.

Midweek Check In

They radiation therapy has given us some anticipated side effects with some swelling in Sabine's throat. Some tiredness. On Wednesday morning Sabine gets some bloodwork done and her second infusion of (elotuzumab)‎.

In the midst of all this, son Joshua and Rachel have their first baby, Alexander Wolf who came in at 9# 11 oz.

Infusion Day At UW Hospital

An almost all-day session at the University of Wisconsin Cancer Clinic as we began a four-hour IV infusion of Sabine's new cancer drug. In the midst of all this, and trying to find a vein [the mobile venous A-team had to come with an imaging machine to get the needle in] we were rushed away to radiation oncology to get Sabine's last zapping [number 5 in this cycle]. Whew.

During the afternoon we will be watching for any negartive effects of the drug. If so, she may have to be hospitalized for observation. And somehow tomorrow we will have to fit dialysis in.

In problem at a time... One step at a time...

Catching Up: Radiation, Medication, and a New Additional Chemo Drug

Since our return from U.W. Hospital it has been a whirlwind. Sabine started radiation therapy on Friday and Saturday (friend Jeff took her to her Saturday morning appointment while I joined granddaughters Heather, Gracie and Gracie's mother for the 3rd Annual Dubuque Boat Parade) (see pictures below). Sabine's brother, Rainer, showed up on Sunday to help out this week with Sabine's mom.

Radiation was again administered on Monday and today (Tuesday). The 5th session (and last in this cycle) will be tomorrow after an afternoon of the first of four weekly infusions (read: in hospital) of the additional chemo drug, elotuzumab, which is a monoclonal antibody. The first administration of this drug is scheduled for a four hour period of time.

So we have a plan to move forward hoping that the radiation will quickly help reduce the cytomoma to reduce her neck pain. Next, the chemo should kick in and we should see the results in about 4-6 weeks with another MRI.

Thanks to another friend, Tony, Sabine was able to take a ride to Dubuque and pose with the pirate girls before they headed back to Michigan and California on Sunday.

Whew!

With a great sense of thankfulness and accomplishment I post this.

Dubuque City Marina Basin

Getting ready for the 3rd Annual Lighted Boat Parade (we should have won -- our theme was Halloween and we had a pirate on the bow, scary Halloween music and a fog generator which enveloped the boat).

Capt Jack and his all-girl pirate crew (in the midst of last week's pain and cancer-scare, some levity was needed!

Another shot of Capt Jack (with dreadlocks) and his crew.

DAY 6: Out of the Hospital

Whew! What a week. Sabine was released from the hospital last night at about 7 pm. We stopped for a quick bite to eat and headed back to Blue Mounds. Cousin Helene was with Sabine's mom for the past week and granddaughters Heather and Gracie, along with Gracie's mom (also a Heather) arrived to help out. Gracie was really hoping we would be able to make the Dubuque boat parade on Saturday night! And it looks like that might be possible.

We slept in, I went for a swim, Helene made breakfast for us and then we dialyzed.

So here's the drill ahead:

Sabine's brother, Rainer, is coming on Sunday to help us out and relieve Helene.

Sabine is scheduled for her first of five radiation treatments on successive days except for Sunday. The first round of radiation will end on Wednesday.

On Tuesday, we see Dr Sheehan (Sabine's favorite oncologist) to begin a new chemo regimen which will be a continuation of lenalidomide (Revlimid) and dexamethasone with the addition of elotuzumab which will be administered once a week by infusion at the hospital (a somewhat big change).

Four to six weeks from now Sabine will have another MRI to check on the plasma cytoma which is pushing on her spinal cord at C3/C4.



Great to be home and enjoying the Great Creation which surrounds us.

Day 5 in the Hospital

Last night we got the preliminary results of the PET scan: Just ONE hotspot [the one we are concerned about] and NO OTHER myeloma signs [bone erosion or cytomas]. Praise God!

We are to have a consult this morning which will provide a way forward for us that most likely will involve radiation therapy on the plasma cytomas on the cervical vertebrae [C3/C4] and a new chemotherapy. So far, so good.

Stay tuned and for all of you out there who forwarded positive energy and/or prayers: THANKS A MILLION.

Day 4 in the Hospital

Dialysis this morning and then a PET scan this afternoon that will hopefully tell us what is going on and how much of it. We expect to discuss a way forward, a treatment plan, with our oncology team sometime tomorrow. 

If the mass turns out not to be an infection but rather a plasma cytomegalovirus then most likely Sabine will undergo radiation on the "hotspot." We expect that, concurrently, there will be a change in her chemotherapy protocol to respond to this new development.

We will know better tomorrow as to what lies ahead.

Let's have some of those good vibrations coming through postive thoughts and/or prayer!

Day 3 in Hospital

The plan forward,looks like this: I can continue to do daily dialysis with Sabine in the hospital. A great improvement from 8 years ago and greatly reduced Sabine's stress. Looks like a biopsy or surgery is too risky. The problem is whether or not this is an infection or a cancer (plasma cytoma). To help determine which it is a PET scan is being scheduled to help discern if this is cancer or an infection around vertebrae C3 which is pushing on the spinal cord and beloved to be causing the headaches. The problem is that radiation is not so good if it is an infection; but a good course of treatment if it is.

In the meantime, it is hoping and praying time for us.

P.s. Buddy's cousin, Helene, is coming down from Stevens Point this morning to elder-sit.

(Photo below: at UW Hospital dialysis center this morning.)

Hello Darkness, My Old Friend,

Yes, I've come to walk with you again (Simon and Garfunkel).

All this happened so rapidly. Those of you who know me know that I haven't posted on this blog site for some time now. And tha's because all has been well as SABINE and I enter our 8th year of "managing" this cancer. 

So here's my story....

With piercing neck pain I finally got SABINE into the ER yesterday. They did an MRI and found a mass on her cervical vertebrae. It was causing the pain. But it is not known at this time whether it is an infection or a cancer. 

The tentative plan is to have neurosurgery go in (if they can do so,safely) in order to have more info. If it is an infection, then antibiotics, if it is a cancer, then radiation therapy. 

Helene is coming down from Stevens Point tomorrow to help out with Buddy. I am not only needed here for moral support but also the hospital staff has permitted me to conduct Sabine's dialysis each day.

This is a big setback for us. All was going too well. But eight years is not a bad run. I hope and pray we can eek out more time. 

I am not ready for this as I sense this growing fear and sadness within.

Love to you all. Prayers are most welcome.