A quiet day -- no medical appointments...

we walk
arm in arm
in the cold
the familiar road
now different
paths we have walked
a score of years or more
and now
different
each step
new and frightening
we hesitat
but do we care?
for who is this next to me?
it is you
the path
the journey
inconsequential

Cold Days with Warm Hearts!

The dialysis-chemotherapy combination has been difficult, but Sabine, the good, solid trooper she is, is bearing up wonderfully!

And thankfully, last night's dialysis went smoothly with no nausea to speak of.

We have surgery rescheduled for next Tuesday morning -- the more permanent and asceptic tunnel catheter for dialysis purposes will be inserted.

Next Wednesday we meet with Dr Sheehan at the UW Cancer Center and talk about how Sabine is doing and, hopefully, what the next step will be.

We found out that the massive head and body ache Sabine had the other day was due to a massive regeneration of her bone marrow due to the growth hormone we had been injecting. She is off that for a few days. The blood chemistry numbers are looking better:

Between Monday and Wednesday:

Creatinine: from 6.5 to 4.8 (from a high of 7+)
Blood Urea Nitrogen (BUN): from 43 to 29
Hemoglobin: 10.4 to 10.5
Platelets: 228 to 317 (from a low of 43!)
White Blood Cells: from 10.4 to 39.6 (from a low of .2!)

All good numbers...

We have had to negotiate a crippling weather situation with the temperature dropping 50 degrees within a 24 hour period: from +40 to -10! Think Spring!!

My Church Newsletter Reflection

[The following is from the February Newsletter of St Peter’s Episcopal Church, North Lake, WI www.StPetesNorthLake.0rg :

A Note from Your Priest…

Last month my notes were written at the U.W. Hospital just after Sabine was admitted with kidney failure and high blood pressures. During the last month a lot has happened (as many of you know by following my almost daily weblog. We now are living with cancer. Sabine has multiple myeloma, a cancer of the bone marrow.

I have two close friends of mine that have lost loved ones. I am sad to say that they both blame God for what happened. After all, God is an easy “fall guy” for a lot of our pain and suffering and what’s wrong with the world.

But seeing that I am a priest, the most pastoral thing I can do right now is to share with you my theological reflection on “when bad things happen to good people.” And, certainly, Sabine, being ill with this terrible and vicious disease, is a very good example of a bad thing happening to a very good person.

[On the other hand, I would have to admit when bad things befall me, I could take refuge in the fact that I deserve all I have received – or, “the guy had it coming to him.” But then this is not about me – but about Sabine (the mantra of the Couper-Lobitz clan.)]

So where is God in all this? Well, right here. Standing shoulder to shoulder with us in this less-than-perfect world. And if I should from time to time state that I hear the strange rustle of angel wings during my woodland walks, I will attribute that to your love and prayers. Or as an old friend recently reminded me that he, being a “pagan” could not pray for Sabine but that he would send her loving thoughts. And my reply was simply a hearty thank you and that God would gladly use his loving thoughts for her care.

As a people of faith, we pray for healing, but most of us back away from the thought that God doesn’t work on our timetable – God is not our theological marionette – to be used by us, but rather for us to be used by God.

If we can rest in the truly acknowledged fact that God loves us as a parent loves a child, then what happens may not be best for us in the short term but rather the term of eternity. (Now if we don’t believe in eternity, that is another matter!). But as for me, I choose to hold an eternal view – that God is who God says God is – the God of the Hebrew and Christian sacred texts.

And that we can pray for “this cup” to pass by just as Jesus did and not having it removed from our hands, we can say “Lord, not my will, but yours be done” because God has the eternal view – a view you and I may struggle with from time to time and when we see we see only darkly.

During my walks in our woods I have heard the rustle of wings (and they are neither hawks nor turkeys). I recently heard the wonderful Taize hymn in my head again and again: “Come and fill her with your love, for you alone are Holy; Come and fill her with your love, Alleluia!”

Thanks so much for being such a warm and loving assembly of Christ-followers. You, again, have shown me and Sabine the face of Jesus.

Keep a Blessed and Holy Lent,

David+

Another Snowy Day

What crazy winter weather we are experiencing. It was in the 40s when we woke up this morning and by the end of the day it was snowing and the temperature had dropped to 10 degrees! Tuesdays and Thursdays have become our quiet rest days. We have labs and dialysis on Mondays, Wednesdays and Fridays so we welcome not having to run to Madison.

Nevertheless, Sabine had severe headaches and bone pain today prompting us to call the hematology clinic. They thought it was because of the growth hormone (neupogen) that Sabine was taking and advised we skip her injection today. We have also had some problems with a high heart rate that we think is associated with the dialysis.

Thankfully, Sabine was still able to get outside and take a short walk before the weather turned.

Another day…

Our Second Week at Home

This weekend was a respite. The weather was mild and Sabine got some nice walks in. We were worried this morning as we went to have her labs taken at the clinic as to whether she would need a transfusion if her platelets got too low.

I was able to have the lab fax me the results this morning and after consultation with the U.W. Hematology Clinic they were able to tell me that we did not have to make an special run to the Infusion Clinic.

Sabine was very tired this morning after the lab journey so I did a phone consultation with the GHC nurse in charge of Complex Case Management and met with Sabine's new physician, Dr Deb Williams at the downtown clinic. I walked away from both those encounters feeling more confident that we have a team to address the complexities of myeloma.

We are now at the dialysis clinic in Madison. We will be doing dialysis every Monday, Wednesday and Friday evenings from 5:30 for 3-1/2 to 4 hours. We continue to pray that after a few weeks when the kidney specialists stop dialysis that Sabine's kidneys will "kick-in." In the meantime, dialysis will be a big part of our life -- but it doesn't have to control our life!

I continue to give Sabine an injection each day of a growth hormone called neupogen during this period of chemotherapy. Neupogen keeps her white blood cells count up. The Home Health nurse came out last week and showed me how to administer the shot (I think I am doing pretty well and have yet to faint!).

Sabine's sister Barbara has taken charge of the kitchen and the diets that Sabine must follow (thank God for that!). The plan is that when Barbara leaves she will present me with a menu I can follow. She and her husband, Ken, have been real helpers having come from their home in Missouri. I sometimes wonder what folks do without friends and family during times of crisis -- it must be terrible.

We have been bouyed up by folks on the myeloma list-serve group who share their journeys with us and I have been especially encouraged by hearing from folks who have been managing this disease for a good number of years. Sabine and I plan on attending the Madison Myeloma Support group next month (it meets the third Tuesday of each month).

Our plumber, Bill, has finished his work in the cottage and Sue, our electrician, plans on finishing up this week. On the way back from our lab work this morning I took Sabine by the cottage and she was excited to what had been accomplished and what we have planned for the "cottage-raising" next month.

We are so grateful to have such wonderful friends and family. Thank you all!

Winter's Day at New Journey Farm

Yesterday (Saturday) was one of the most peaceful and quiet days we have had since the "freight train" hit us.

The temperature was in the high 20s, and the snow quietly laying on the branches. And our wonderful neighbor, Bob, plowed us out again for the umpteenth time this year -- thanks, Bob!

Deb Mejchar came up to Charlotte's house and taught Barb and I how to tie an African-style headdress so we could show Sabine. What a blessing! Deb had worked all last night as a night chaplain at Meriter Hospital.

Sabine is now slumbering in spite of the tiredness she feels with the low WBC and platelet counts. We pray this chemotherapy is working and decimating those myeloma cells!


Our geese and donkeys contentedly paddle and munch through the day.
All seems well in the Kingdom. We sense God's peace and love.





Thanks again to all you who hold us both in your prayers and hearts.

We wish we could be with our family at St Peter's this Sunday. Thankfully Charlotte is headed that way and will meet up 1/2 way with Andy and Kathy who will bring her to St Peter's.

We love you all.

First Out-Patient Dialysis

While yesterday was a little crazy with the cancelled surgery due to Sabine's neutropenic (low immune system) condition, our 4th dialysis went well. We have to be very careful of infections so I am having little outside contact with people until Sabine gets through this low point in her chemotherapy.
FOLLOWING DR'S ORDERS! We have been taking slow walks so that her system stays healthy. This morning, after another snowfall and mild temperature (we went from -20 to +20 within two days!) we walked in our beautiful, snowy woods. She made it nearly to the end of the uphill central trail path!
Mocha has been up at Charlotte's house while all this is going on. So she just about goes nuts when she has a chance to see Sabine -- she runs circles around her and makes magnificent in-air jumps and twists to demonstrate her wonderful doggy happiness.

Charlotte, Sabine and I want to thank everyone for their cards of love and encouragement.


The battle continues.... Lord, you are our strength and our salvation!

Surgery Delayed

Another wild day! We had Sabine’s lab work drawn on our way to the UW Hospital Catheter Lab where we met Dr Yevzlin who would be performing the surgery to put in the more permanent (and more aseptic) tunnel catheter for dialysis.

We just started watching one of Sabine’s favorite movies (Johnnie Depp in “Pirates of the Caribbean”) when the doctor came in and said that her blood work (because of the chemotherapy) had dropped too low to do surgery.

Sabine is now deep into a neutragenic condition with WBC at 0.4 (two days ago it was 2.0) and her platelet level at 48 (two days ago it was 150). So we packed up, cleaned up and went home.

For those of you following numbers, Sabine’s creatinine level was at an all-time high of 7.7 and her BUN (Blood Urea Nitrogen) was at 68 and her hemoglobin was 10.5 (two days ago it was 12.0).

The dialysis is still scheduled for late this afternoon in the clinic’s neutragenic room to help prevent Sabine from getting any infections.

Ken, Barb, and I are taking all kinds of sanitary precautions and avoiding contact with others during this period of time as her blood cells plummet and the chemotherapy does its work. Please pray for no complications and no infections during this time. When we go to do blood work on Monday her immune system will be just about at its lowest.

My Complaint to Group Health Cooperative

What I didn't put in yesterday's report was my encounter with Sabine's health insurance carrier, Group Health Cooperative of Madison -- ranked the 7th best health cooperative in the United States by Newsweek Magazine and the top provider in the state of Wisconsin.



To Member Services:

I can’t tell you the level of frustration I have about the coordination of my wife’s illness. And yes, I am her care provider and have a power of attorney for medical care.

Her illness (which is now diagnosed as multiple myeloma) began with severe headaches and nausea brought on we later found out by spiking high blood pressure from acute kidney failure. When we were released from the UW ER about six hours later, the ER doctor advised us to see our primary care physician because of a high creatinine level.

Her primary physician is Dr Hartges who was unfortunately leaving for a family vacation. Had Dr Hartges not had to leave on vacation, and because of our long family relationship with him of over 20 years, I think things would have been different… at least I hope they would have.

So Dr Hartges referred us to Dr Gherlan and an appointment with a kidney specialist, Dr Yevzlin. All well and good.

Now here is where things started to unravel. I think we had two more ER runs after midnight and then the first hospitalization on December 30 (I know, a bad time to get hospitalized).

The attack on the acute renal failure which was at first thought to be because of some ibuprofen ingestion when Sabine had a cold was IV hydration and then watch the numbers. Well, after a week or so the numbers didn’t get any better.

Dr Eckerle would come in but we never quite knew what his role was until one morning a green card appeared on Sabine’s bulletin board announcing that Dr Eckerle was “in charge” of our case.
So I started focusing on Dr Eckerle who assured us that he was coordinating this case and to call him.

But somewhere along the line Dr Eckerle was no longer available, rotated or something like that. We never had another person from GHC come along and take over. But we did finally schedule a kidney biopsy.

Then one day a hematologist came in and said that Sabine did not have interstitial nephritis (as most thought) but that her kidneys were being shutdown by being clogged with ‘B cells.’ She said she would get back to us.

Hmmm. B Cells, I wonder what they are? The “C” word was never uttered and the next day when I had researched what B cells were and knew it was some kind of blood cancer going on, no one came by – 24 hours of hospital room waiting. Quite frankly, I expect better.

To make a long story short, Sabine had a bone marrow biopsy and full body X-ray which confirmed the presence of MM. We had a nice meeting with Dr Sheehan in hematology/oncology and that very day we received the final diagnosis Dr Sheehan had Sabine hospitalized that afternoon and chemotherapy began that evening.

All along the way we felt a conflict between the renal and hematology teams as to the course of her treatment – that’s okay – but who makes the call? Is it really my job to call the lead docs and get them together? (When I did, it was the first time they had met one another). Wouldn’t a better system be for our GHC coordinator (if such a person exists) to call a meeting and decide a course of medical action?

Early in our hospitalization we had a resident, Dr Kari Kindschi, stay in touch and coordinate things, but then she got rotated to emergency medicine. Someone like her on staff is what GHC needs.

So, after discussion that we initiated between renal and hematology, Sabine will be getting a tunnel catheter this morning at UW Hospital and then going to the UW Dialysis Center on Fish Hatchery Road.

We met with Dr Yevzlin at the clinic yesterday morning. That went well and we asked Dr Yevzlin wanted us to begin dialysis Fish Hatchery clinic that afternoon, he left, and we asked for a tour of the facility.

We were not impressed. We thought it to be unkempt and crowded. The location is a strip mall and did not quite fit my professional expectations. Sabine's WBC is very low and, quite frankly, we were worried about infection as Dr Sheehan and Dr Juckett asked her to take neutragenic precautions and wear a mask in public places.

So I called GHC and ended up with Member Services trying to get Sabine's dialysis performed at the hospital due to her low WBC and new surgery.

It was not a happy encounter. I was on the phone for an hour. I was put on hold at least 3 times – one time for 10 minutes. I was told the dialysis had to be done at the clinic and not the hospital and that the UW Dialysis Clinic was our only choice.

Getting nowhere, I asked to make an appointment to speak to someone in management and was transferred after all this to Lisa, the Complex Case Mgr. I don’t know what happened to my request for a face to face appointment with management. I was upset needless to say but Lisa and I worked through putting Sabine on the Complex Case List (certainly Multiple Myeloma would qualify!).

My first encounter with what I believed to be the strong point of GHC from the time I was a board member in the 70s to the present time was that we provided for patient feedback into the system. I don't think it works and we have become another mega, corporate-like healthcare system.

But what I also want to tell you is that what saved the day was Lisa, and then Dr Chan calling us later in the day and assuring us that the procedure was needed and he personally reassured Sabine that the clinic would be okay and we could trust Dr Yevzlin (the newest guy in our life).

At the end of the day Lisa called back after talking with the folks at the dialysis clinic. They told her that, yes, the day was very chaotic with a shift change and some tracked floors at the time we visited...

Sabine's husband and caregiver, former GHC board member and former member until I had to transfer to the VA system because of a military radiation exposure,

David Couper

DIALYSIS!

Frustration

Yesterday we were able to get a physician from our Group Health Cooperative to oversee our situation. We will be meeting Monday with Dr Deb Williams from Internal Medicine at the Capitol Center. That was good news.

Up the roller coaster…. Down the roller coaster. Maybe it’s the nature of managing this disease that once things start to look better they get worse!

We met with the kidney specialist this morning and the old conflict reared its ugly head: do we put in a tunnel catheter or keep the temporary one in? Earlier the hematology people said that we should wait – the danger of infection with Sabine’s WBC count being so low because of the chemotherapy she is on.

But the kidney folks said that her kidney numbers are going up (5.6 creatinine level and BUN at 51) and that dialysis is needed. They also say that the temporary catheter in her neck is an infection site and dangerous whereas a “tunnel catheter” is safer because it is farther away from the heart and has a bio-shield on it.

So we had the kidney specialist (another new guy in our life) call Dr Sheehan (our hematologist and oncologist) and although we could only hear one side of the conversation the kidney specialist said that Dr Sheehan agreed we should put in a tunnel catheter and schedule dialysis. The good news is that the treatment plan will begin dialysis for a while, stop it, and check and see what the kidney numbers look like. The kidney specialist said that some folks do regain the use of their kidneys even after dialysis. This is something to pray for!

So we are scheduled for surgery in the catheter lab at the U.W. Hospital tomorrow morning at 11:30. And that Sabine is to begin her thrice-weekly, 3-1/2 hour dialysis sessions at the out-patient Kidney Center in nearby Fitchburg (just south of Madison).

Let me digress a bit… this afternoon I was greatly upset by the lack of coordination in our healthcare system. There were doctors that came and went and said they were in charge but were not. We had to do this, we had to do that… is that what we have paid for over 30 years? I am getting tired of being a case manager and care person. I thought that is what we paid professionals for… wrong!

When we heard the bad news today… kidney numbers going up… new doctors… the need for a permanent catheter… out-patient dialysis… it almost all came tumbling upon my head again…

I called GHC and complained about the lack of coordination. I was making a complaint and was put on hold three times (5 to 10 minutes each time). I was put transferred to different people. I wanted to talk to a person in management and they transferred me to a nurse during an hour’s phone call.

I was frustrated, angry and feeling the system was not working, but this nurse, Lisa, told me about a Critical Case Management Team that they had. But Sabine was not on it. But Sabine would be put on it and she would work with me to make this happen. The anxiety started to diminish. I felt like a person again. We would talk tomorrow.

But then something just as important happened. Dr Chan of the kidney team called us back. Dr Chan had been with us during the kidney battles of the last two weeks. He was someone we knew and trusted. Yes, he said, he agreed with the procedure, the dialysis clinic would be just fine… he would occasionally see us there. And it all became manageable again. The system, fragmented as it was, could work…

This was a draining day. I am a tough guy and was just about ready to say “uncle.” I worry about other people – people less informed, less assertive than I who would simply give up. Brothers and sisters, we need to change this system called healthcare. When you vote next November vote for someone who is committed to this goal and who will do it – and I don’t care if it is a Republican or Democrat. I want change. You do, too. Our lives and the lives of our loved ones depend on it.

As Edward R. Murrow said while signing off his radio broadcasts, “Good night and good luck!” God help us. As the Psalmist wrote: “Unless the Lord keepth the city, the watchman waketh but in vain!”

Home at Last!

Well, here we are last night after Sabine got in her new bed in the newly cleaned house!

We are off today for blood tests this morning (and on every Monday, Wednesday and Friday).

GOOD NEWS!

Well, we just met with Dr Junkett and it looks like we are going HOME today! Sabine is responding well the the chemo and the plan is this: she goes home with the temporary PIC connection in her neck (in case she needs hemodialysis), we monitor her vitals (BP and temp), she gets blood drawn every other day which is sent by the lab to the hematology and renal teams and to us (we are hoping we can coordinate with GHC a prompt sending of the lab results to the UW Clinic). The goal is to provide a "seamless" system of care and monitoring.

In the meantime, Sabine will be extremely vulnerable to infection during the two weeks as the chemotherapy plunges her white blood cells and enables them to regenerate -- hopefully without the current cancer.

Depending on the chemotherapy, how the kidney's respond now without dialysis, we will see how this first phase of treatment goes. This disease is called "Multiple" Myeloma because it is not so easily predicted as to where it pops us -- we pray for a cure for all those who suffer from MM and in the meantime we will work on longevity and quality of life.

YOUR PRAYERS ARE WORKING! THANK YOU!

This morning we are awaiting a consultation to check on how the chemotherapy and hemodialysis combination is doing. Sabine's third dialysis was a little better and less nausea (they say you get used to it -- but 'ugh' you lay there and your blood goes somewhere else and then comes back to you...). Yesterday, Dr Juckett (from hematology/oncology) said he was pleased with how Sabine was responding to the Cytoxan. She was tolerating the chemotherapy very well.

We hope to be consulting with him this morning and see what the next steps are.

There is some movement on Sabine's request to try and finish the cottage. My friend, Kurt, who has offered to be the "construction boss" (don't worry he is a gentle-man) has proposed the following dates for the Amish-style cottage raising: FEBRUARY 21-24 (this incorporates two weekdays and a weekend). Those of you who can help, please mark this on your calendars and then let us know if you can come on one or more of those days. Kurt and I will make a list of tasks.

Stay tuned... I hope to publish something later this morning or early afternoon as to the "next steps" regarding Sabine's treatment. And, by the way, thanks again for all your offers of help.

Our friend, Deb Mejchar, said that she would be able to meet a particular need of Sabine: to learn how to do African-style head-wrapping with bright cheery colors!

A poem for the day:

I wish I didn't love you so much
I wish I didn't feel your pain and fear
but then what would that be?
what would I be?
we became one flesh that beautiful, cold, wind-swepted day so long ago
and now we two cannot be separated
and what you feel
brings the sadness you see in my eyes

Sabine had a good day yesterday (Sunday), we did some walks in the hall together (and Sabine with her mask that strangely looks like a duck’s bill!). The dialysis has dropped her high creatinine and BUN levels. This morning she is going off to her third dialysis treatment and we are praying for no nausea and good numbers.

I know Sabine is feeling a little better because yesterday she said that what ever they wanted her to confess to she was willing to do it – She said, “Just give me the question!” The question this morning (after a fairly good night’s sleep) is, “If this is a B&B why are they torturing me?” Or if this is Guantanamo Bay, “Why is it -20 below zero outside?”

The white blood cell count has yet to take the plunge which will bring on a new set of problems. I think the kidney team would like to put in a permanent PIC line while the blood team is worried about the surgery this would entail.

Sabine’s primary physician, Dr Tom Hartges, from Group Health Cooperative, should be back from a family vacation overseas and we look forward to working with him to COORDINATE these in-patient and out-patient (and im-patience) systems.

Sunday, January 20, 2008

It’s -20 degrees this morning! – the coldest it has been in quite a few winters. Barbara and I, however, got a good night’s sleep. Ken went back to Missouri to get some of their affairs in order and will be coming back this week. Sabine did her second dialysis yesterday afternoon and it seemed to go a little better than the day before when she received 2 pints of blood along with the dialysis and some nausea but not as bad as Friday’s. A third dialysis is scheduled for tomorrow.

I know that so many of you want to come and lend a hand – especially our children. It is very difficult for me to explain to you why I am resisting this unless you yourself have encountered the intensity of sudden illness or death of a child or spouse -- to be on the periphery of a “storm” is one thing – but to be caught in the vortex is quite another thing.

I know it may be hard to understand that I need to be with Sabine and that I need to conserve my strength so that I am there for her – even at the expense of others in my life. This illness has happened so fast and is so intense that I have to write these blogs to explain my feelings and what is going on in our lives. It is so fast and so intense that I don’t have the energy to explain to everyone what is happening. For when I even attempt to do so, or try and talk to someone on the phone, I break down into almost uncontrollable weeping. The prospect of losing Sabine is more than my heart can bear – but, of course, bear it I will – but for now my focus must be on Sabine… and to conserve her limited strength while at the same time I must try and limit the sadness she sees in my eyes (but knowing at the same time we must from time to time be able to weep together – to “name, claim and tame” this beast that works within trying to destroy her.

I promise that I will try to let you who wish to DO something have that opportunity to do so. For example, the housecleaning at the farm was something that needed to happen almost immediately (though her crashing kidneys forestalled her coming home last Friday when we thought) and finishing the work on the Mazomanie cottage is another project that will make her more at ease – she certainly brightened up when I told her that some plans were in the wind to do so.

The effort to create the “last man standing” cottage a couple of years ago from that little shack along the railroad tracks in nearby Mazomanie is an enormous irony, but the fact that the cottage is “handicapped accessible,” 80 percent completed, and is in Dane County (with a greater array of county social services) may be a great help and comfort to us in the months and hopefully/prayerfully years to come.

My friend and sword teacher, Kurt Lifka, has been working with me over the past year in remodeling the cottage has offered to coordinate the cottage’s finishing work. Kurt is an accomplished cabinetmaker, home remodeller and has coordinated large construction teams in the past. So if you want to be part of this Amish-style final house-raising you can email him at country1@mhtc.net. He's an all-around nice guy with a gentle soul and great to work with.

Another thing that would help as long as Sabine is hospitalized (her sister, Barbara, and I are doing “shifts” to help coordinate the healthcare disciplines) would be if some folks could be available as a “car pool” to drive Barbara (she doesn’t drive) to the hospital and/or pick her up to relieve me. If you are able to do this, please let me know via email (davidccouper@aol.com).

Where we are right now: the kidney problem has led to complications regarding Sabine going home. She has a temporary “pic” line that could be a sight for infection and her immune system will soon be crashing to dangerous levels because of the chemotherapy. The med staff is considering placing a more permanent blood line but that would require surgery. Hospitals, contrary to popular belief, are places full of “bugs” and the quicker one gets home, the better. At home we could continue monitoring her blood chemistry at a local lab, go to thrice-weekly dialysis sessions on an out-patient basis and she would be in a “cleaner” environment over-all. So we are working with the kidney and blood folks to decide the best and most asceptic course of action for Sabine.

This afternoon I am looking forward to attending worship services here at the hospital (a Catholic Mass at 4 p.m.). As a priest, I have greatly missed leading worship each Sunday and I think I probably am emotionally stable enough to join in corporate worship. It is a strange feeling… yet at the same time I deeply feel both God’s help and presence.

Thank you again for your prayers, love and concern – there are so many of you out there that whenever I mention to Sabine your wonderful offers of help, she simply sits there and weeps with gratitude... as I am doing right now…

We enter the first tunnel...

January 19, 2008 -- early morning

the brickwall opens
but into a long dark tunnel

what was once unthinkable
has become passable

we hesitatingly, warily
enter

with cautious first steps
we move forward

can we live in this tunnel?
will this darkness stifle our lives?

no, no!
because we walk together

look!
a light breaks through

January 18, 2008 Late Evening

I am writing this tonight from the U.W. Hospital. It has been another long day. We all expected yesterday that Sabine would come home (after all, we go the house all set up in time!) but other things were in store for us today.

There appeared to be a conflict between the kidney doctors and the cancer/blood doctors. Yesterday the renal team wanted Sabine to be taken to dialysis but the oncology team wanted to wait (I think they were worrying about infection as Sabine had already received her chemotherapy. I had to try and get the conflict resolved between the two teams. Late this morning the kidney docs said that if Sabine did not get dialysis right away she would be getting VERY sick (creatinine levels went to 7 and the BUN to 70!).

But we did not want to start dialysis until we had a sign off from the cancer team. We finally got the two lead doctors together (who hadn't met before!) and agreed that we had to do the dialysis.

Sabine then had surgery in her room to put a "pic" line into her jugular vein in order to receive the dialysis. At 6:30 p.m. she head down to the dialysis unit for 2+ hours of dialysis and 2 pints of blood. She will get dialysis again tomorrow afternoon and then again on Monday. They start slow with dialysis in order for the body to get accustomed to this intervention.

I just got her up to her room and it appears that so far she is tolerating both the dialysis and transfusion. As her blood count plummets in the next few days we have to watch out for infection. We hope we can get her out of the hospital early this coming week.

Over 30 days in the managed health care system is a frightening experience -- so far we have experience what appears to be a lack of system coordination and our HMO fighting over where the labs are to be drawn. Because our HMO wants us to use their lab, we frequently find ourselves meeting with the specialists at UW Hospital without the lab data in their possession. We get blood pressure medication that is known to compromise folks with acute renal failure because it drives Potassium levels (Atacand). We repeatedly have to ask, "Now who's in charge here?" Who takes the lead when different disciplines conflict?

God help us.

Sabine greeted me this morning (after warning me by phone) that she had had her head shaved in anticipation of losing her hair. So this morning I had a chance to meet either Sigorney Weaver or G.I. Jane -- take your pick.

Yes, our life is changing and it is a scary time for both of us. But we are convinced that it can be just as good a life as we have always lived -- dialysis? We can do it!

Sabine and I have always been a team that has been able to handle whatever is in front of us. This is no exception.

Thanks again for your love and support.

p.s. If someone now and then could help my son, Josh, out with some painting inside the cottage in nearby Mazomanie, it would be of help to us. Just give me a call on my cell (608) 444-7207.

Now for a good night's sleep in B6/624 with my beloved! What could be better than to be with her?

January 17, 2008 -- early evening

A flurry of activity today as so many of you responded to our call for help. THANK YOU! By the end of the day we had the whole house cleaned, a hospital bed installed, and an hygienic barrier constructed for Sabine’s bedroom.

Back at the hospital, the medical teams of renal and oncology seemed to clash about Sabine’s kidneys – she needed dialysis, then she didn’t. At the end of the day the medical staff decided to keep her another day. She didn’t get any sleep last night during the chemotherapy and we decided today that oncology should take the lead; that we would abide by what Dr Sheehan, the oncologist, recommended.

Nevertheless, those of us on the home front accomplished the mission: the house is ready for Sabine to come home to.

I will see Sabine in the morning and see how the day progresses and if she will be released home. Thanks to our friends from Portage who showed up even in the midst of a snow storm: Ted and Barb Chesney, Dave and Gretchen Considine, Sue Bradley, Tina Foster, Vera Leamons, Sue Wenger, and my friend from sword club, Dave Swanson, for making the house spic and span for Sabine’s return home. Some cars got stuck, our neighbor, Bob, came and plowed us out and we all started working on the house. And thanks to so many others of you who offered to help out in this emergency. We have asked our friends from St Peter’s in North Lake to be on call. We hold all of you, too, in our hearts!

While many of you could not make it today you have offered to help us in the future and to that we are eternally grateful and will be calling you. This will be a long battle!

Sabine is resting at the hospital tonight. We pray she has a good night’s sleep. Soon the chemotherapy will kick in and the battle will begin. Please continue to keep us in your prayers and for me to be a strong anchor of support for her.

January 17, 2008 -- D-Day Plus One

THE BATTLE BELONGS TO THE LORD! Sabine started her chemotherapy last night. I can’t imagine what her night was like. But we at home got a relatively good night’s sleep and now the ADVANCE begins.

Sabine may come home as soon as TODAY! But by FRIDAY for sure. They want to get her out of the hospital as soon as possible because that place is filled with GERMS!

HERE’S THE BATTLE ASSIGNMENT FOLKS – all you that offered to HELP. We need 6-8 people to help us clean this dusty farmhouse, seal off a room for Sabine, transport and put in place a hospital bed, and a host of other chores.

I know this is short notice. I know it is snowing this morning, but we honestly do need help and we need it NOW -- and we need it fast. This is an emergency. Barb will start the phone chain at 7 a.m. this morning.

This is a critical time as Sabine needs to be in a fairly aseptic environment she is very susceptible to infection during the next TWO WEEKS.

God bless you all and godspeed!

January 16, 2008

The Allied forces have landed and a beachhead has been established! It’s now just after 8 p.m. and we have been at the hospital since 11 a.m. this morning It was one of the most scariest days I have ever experience. We both thank Sabine’s sister, Barbara and her husband, Ken, for holding our hands through all this and being with us this week.

We had our consult with Dr Sheehan and we have the name of the “beast:” just as we thought – MULTIPLE MYELOMA.

From our consult, Dr Sheehan suggested Sabine be immediately hospitalized and an aggressive, high-dose chemotherapy begun – possibly begun even this evening. So wwe agreed to this option. The drug that will be used during this first phase is called “Cytoxin” (cyclophosphamide). It will knock down her white cell count and hopefully enable her blood marrow to generate non-cancerous cells. But she will be extremely susceptible to infection during the following two weeks and cannot have contact with others. She should be in the hospital about 2-3 days after taking this therapy and I will take her home to recover. There is probably a greater chance to get an infection in the hospital than at home.

Those of us on the home front will have to get the house in order: such things as board the cats and the dog, get rid of all our plants, and make sure the house is spic and span. We also have to be careful of any donkey or geese manure on our shoes. We have work to do!

Needless to say, this has been a tense and draining day for all of us. What we heard was that Sabine has a good chance to buy more time – the disease is still incurable, but we can buy some quality time thanks to the excellent cancer center we have here in Madison. While Multiple Myeloma does not have a cure, there have been some great advancements in containing it.

My friends, I am hopeful. I know Sabine has the will and determination to live and the job of those who love and care for her is to support her through this ordeal! I know my prayers have been answered and what was once a brick wall has now become a tunnel. Thank you all for your cards, letters, emails and phone calls. God is good! The battle begins...

January 15, 2008 (later)

I mentioned some photos. So being new to this blogging business I think this may work.

Click on: http://picasaweb.google.com/davidccouper/SabineBlogPics2?authkey=AZAoQxKaOO8

Or paste the above link into a browser...

January 15, 2008

D-Day minus one. Please excuse my battle analogy, but I am a child of the 40s and I do sense us as staging for a great battle. The landing is tomorrow. And the beach is the UW Cancer Center and our consult with the oncologist, Dr Sheehan.

In past childhood fantasies I was the Marine with a gun. I see myself today as the chaplain with a Cross on his helmet. (That's a big shift for me!)

It’s so nice to have a majestic cathedral in your backyard. And, of course, that is our 50 acre woods with its hills and trails. On my walk today, I heard this: You prayed for the gift of love and I gave it to you; but you must remember that with the gift of love comes its close friend, compassion. You cannot have one without the other.

I know that to fully love means to deeply give ourselves to the other. And that we cannot really experience the total deepness of love without totally giving ourselves. So when your beloved is frightfully ill, you cannot but experience their pain. That is the great paradox (or it is such a large para-dox we should call it a para-geese!) (groan!).

I remember the first time praying for someone who had been deeply injured in her life. It was at an Alpha Conference and suddenly, as I three of us were praying for this woman I was struck by feeling her pain and suddenly tears of compassion were flowing down my cheeks. Aha, God, so this is what you meant?

If we enter into great love we will experience great pain for no love on this earth is everlasting… And if we hold back, then we will be spared the experience of parting pain, but never experience the fullness of love for another… never feel compassion.

Yesterday, I pasted some photos of Sabine on this blog (see below) and I think they, collectively, begin to capture her essence, her love of life – and her supreme “giving-ness.”

You all have asked how you can help. I just ask you to hold those offers and I won’t forget them. The landing will be difficult (I think that will be tomorrow) and then the journey toward victory begins. I want those of you who feel you must help know that your offers are graciously received – they are comforting to us – but remember victories are not necessary won during the first engagement. We are in this for the long run!

Some things you can do: Write a card to Charlotte (Sabine’s mom: 5284 Country Road K, Blue Mounds, WI 53517), she is holding up the cooking and farm chores while we nurse Sabine and work to get her strength back. Put Sabine on your religious institution’s prayer list. Send Sabine a card that she can open next week.

Pray for us and for the UW Clinical staff for tomorrow.

(And an appropriate prayer from my friend, Pastor Wayne Nieminen: Almighty God, our only source of health and healing, who alone can bring calmness and peace: Grant unto us children, a consciousness of your presence and a strong confidence in you. In our pain, weariness and anxiety, surround us with your care, protect us with your loving might and permit us once more to enjoy health, strength and peace, through Jesus Christ our Lord, Amen.)

January 14, 2008

Therefore all the faithful will make their prayers to you (God) in time of trouble; when the great waters overflow, they shall not reach them.

You are my hiding-place; you preserve me from trouble; you surround me with shouts of deliverance (Psalm 32:7-8).

Ken has returned to Missouri and Sabine’s sister, Barbara, is getting us all ready to travel to the clinic for a blood-draw and consult with Sabine’s internal medicine physician, Dr. Gherlan in Madison.

Barbara has been a great blessing; taking charge of Sabine’s diet and giving Sabine some wonderful foot-massages and helping her relax. Barbara has some experience with all this have gone through her own struggle with cancer.

On my meditative walk in the woods this morning the words “hiding place” came to me. I knew it was from one of the psalms so I looked it up on my return. It is from Psalm 32 and reminded me that God is our hiding place in time of trouble.

I was also encouraged by a gentle reminder from my daughter, Jennifer, about the importance of reaching out. And I will. But I now find myself in a void of not-knowing. I know I must be patient -- but let’s name this thing, this beast, that we are fighting, “tell me your name!” I rage, so I can defeat you in God’s name. I am impatient. I want to get into this fight and conquer the beast that has invaded my beloved!

We went to the morning appointment at our clinic and were pleased to learn that the additional BP medication has lowered Sabine’s BP to an acceptable level (100/80)! She continues to be very tired and her low hemoglobin and low kidney function is no doubt some of the causes. Her physical last May showed normal blood work, so her medical problems have come on relatively quickly and her creatinine level still remains high at 5.9.

Our D-day is most likely going to be on Wednesday during our consult at the Cancer Clinic. I don’t know what the day will bring but whatever it is, whatever the journey, I am confident that God will be with us -- of that I am sure. God, you will preserve us from trouble; you will surround us with shouts of deliverance. Keep us all in your prayers! And thank you for your loving care…

Sabine's Pics

January 13, 2008

The wonderful folks at St Peter’s are going to pull together and give me a break while we sort out the road ahead. As you may know, Sabine’s sister and her husband, Ken, joined us for on Friday morning for the bone marrow biopsy. They are two of our best friends. Sabine had to use a wheelchair because she is getting that weak. We have an appointment tomorrow morning at our clinic and they will draw blood and see how she is managing. Barbara will stay with us through Wednesday when we expect to get the full diagnosis and a plan of attack.

We both want to thank all of you for your loving thoughts and prayers and offers of support. Just remember, we are in this for the long run and we most likely will take you up on your offers in the future. Right now we want to be as alone as possible and process this setback.

Ken and I went snowshoeing in the woods this morning and this poem came into my heart. As many of you know, our woods at New Journey Farm are an important part of our relationship since those days over 25 years ago. We called the farm “New Journey Farm” and so it still is… another New Journey.

Again, thank you all for your love and prayers. Here’s the poem:


This snowy morning
you were too weak to go
into our woods
and see the snowy-latticed trees
and puffy snow
so i walked the trails
pressed by our feet
for so many years
holding you
in the palm of my heart

January 12, 2008

We are back home from the ER. The week got to be too much for us (me) and I asked Sabine’s sister, Barbara, and her husband to come and help me at the clinic yesterday when Sabine had her bone marrow biopsy. And Jeff and Bonnie came down to support me when we returned to the ER on Thursday night after Sabine had a high BP spike.

Coordinating the care of a loved one takes great strength and patience as one negotiates the medical system and all its actors.

We meet with the oncologist next Wednesday to plot a course of treatment. Since Sabine's return home she has been very weak and must go very slow.

We thank you for keeping us us in your prayers and for all your offers of help.

I have been a strong guy all my life. I don't feel so strong anymore... God please give me the strength to be there for her.

January 10, 2008

To Sabine’s sister, Barbara:

We are back in the ER. HIGH BP 210/110.

Maybe you should come down here and manage this case. I am so scared and spend most of the time weeping.


January 11, 2008

Thanks again for your love and care. it just gets so overpowering sometimes regarding these spiking BPs. They let Sabine go in the ER and we had a restful night. The docs in the hospital tell us to go to the ER whenever her BP gets over 180/high 90s -- the ER doc says don't worry about it -- I know this is our journey now -- entering the undefined and different ways this disease will manifest itself.

I just feel SO sad for Sabine that I sometimes am overwhelmed with a sense of both dread and grief. Thanks for being there for us. We have the bone marrow biopsy later this morning and we should know some more answers (hopefully) when we meet with the oncologist next Wednesday at the U.W. Comprehensive Cancer Care Center..

January 9, 2008

I know many of you have been anxiously waiting an up to date report regarding Sabine's condition. Last week we had the kidney biopsy and are now getting those results back along with the results of some intensive blood and urine work.

Sabine does not have a kidney (renal) disease. Instead, her kidneys have been "plugged up" with some blood cells causing 90% of her kidney function to fail.

So, the kidney team is now in the background and the blood team in the forefront. We have met twice with a member of the blood (hematologists) team and they have yet to make a diagnosis. But from were I am -- listening -- researching on the internet -- and putting things together, I expect they will be telling us sometime this week (and maybe after a bone marrow biopsy) that Sabine has multiple myeloma -- a cancer of the blood. At least that is what I am prepared for and if something changes -- like telling us it's all a big joke -- that's what we both think it is.

There are things that can be done to reduce the impact and try and control the disease, but there currently is no cure for it.

When we get out of here, there will be frequent checks on her blood and kidneys and an effort to get this disease into remission.

Sabine will have a suppressed immune system and will be very susceptible to colds, infections, etc. So please don't be around her if you have anything that is catching.

At the same time, she will probably experience some bone pain as there already is some lesions and bone loss already spotted in yesterday's x-rays. This could eventually make her very susceptible to bone breakages.

Then there is the on-going problem of her lack of kidney function: she must be sure to keep those kidneys hydrated and must chemically control her high blood pressure that the kidney failure has caused. Her current kidney failure is believe to be permanent.

Presently, we have the high blood pressure and anemia that is causing a loss of energy on her part; hence my intense gate-keeping for your phone calls and visits.

As I have told some of you already, if you can't talk to her without crying, don't. Wait until you get yourself together so that you can be of help by being supportive and upbeat with her.

Well, that's the report from the trenches. We have both had our crying jags and no doubt many of you will too as you read this. We are grieving the loss of what we had -- but, at the same time, we can welcome a new and exciting future together.

But remember, we are both fighters, trust in God, and we will get through this with your prayers and with God's help.

Now is the time for positive thinking and a chance for her to experience again the healing power of love and prayer.

I am signing out for now. There is more info on MM (multiple myeloma) below. You may want to check it out to see what lies ahead.

In the meantime, we may be discharged today and the future work and treatment will be done out-patient.

We both send our love to you and thank you for you concern, prayer, offers of help and support and -- above all -- your love,

Here is some information from a very good website on myeloma at: http://northtexas.myeloma.org

Also see http://myeloma.org which is the site of the International Myeloma Foundation.

MULTIPLE MYELOMA

Simple Explanation:
Multiple myeloma is a blood cancer. Other better-known blood cancers are leukemia and lymphoma. It is called “multiple” because this cancer typically causes problems in more than one place in the body.

The occurrence of myeloma is on the rise in the United States. It currently has no known cure, but it is usually slow-growing and can be treated. Myeloma has long been known as a disease of the elderly, but in recent years more and more younger people are being diagnosed with this cancer.

The cause of myeloma is not known, but it is thought that certain industrial products, farm fertilizers and pesticides, and radiation might all be contributing factors.

There is no known hereditary factor associated with myeloma, although the occurrence of myeloma within families is being studied.

Multiple myeloma is slightly more likely in men than in women, and it is more common in African-Americans than in Caucasians.

Common problems seen at and prior to diagnosis are tiredness, weakness, infections, bone pain, and fractures.

More Details:
Multiple myeloma is called a hematological cancer and affects the plasma cell, one of the blood cells that comprise the immune system. The plasma cell is an immunoglobulin-secreting cell. In other words, it is a “factory” that the immune system creates in order to generate massive amounts of antibodies, or immunoglobulins, in order to fight “invaders.” Immunoglobulin is a protein that, when produced by a malignant plasma cell, is called myeloma protein or m-protein.
Normal bone marrow contains less than 5% plasma cells. In multiple myeloma there are usually more than 30% plasma cells and that number can increase to over 90%.

There are over 15, 000 new cases of myeloma in the U.S. each year, representing 15% of all blood cancers and 1% of all types of cancer.

According to the International Myeloma Foundation (IMF), “There is only a weak family tendency to develop myeloma. Approximately 3-5% of patients with myeloma give a history of myeloma or a related blood/bone marrow condition within the extended family. Thus far, no specific gene has been linked to this myeloma tendency.”

There are three typical ways that myeloma affects a person. First, myeloma suppresses the immune system, which leaves the person more likely to get sinus, respiratory, and other infections. A suppressed immune system may mean anemia (weakness, tiredness) and low platelets (slowness to heal).

Second, myeloma affects the skeleton. Lesions may lead to compression fractures in the spine, broken ribs, arms, shoulders, or legs. Bone pain is often a side effect of the disease.

Third, the myeloma protein may affect the kidneys to a significant degree. It is not uncommon for patients to have kidney damage and even kidney failure at diagnosis.

January 8, 2008

There has been an unexpected turn. Yesterday, we though we were looking at some kind of kidney disease/injury caused by Mom taking ibuprofen when she had a cough.

Further tests have revealed that her kidney failure was not from that and that she does not have what we all were thinking she had -- something called interstitial nephritis.

As a result of the kidney biopsy (which ruled out disease or injury there) and further more technical blood work, it appears that what is causing the kidney failure (and the high blood pressure) is something outside of the kidneys. What appears to be happening is that some cells called "b cells" have migrated to the kidneys and plugged them up leaving only a 10% function of them.

These "b cells" are in fact cancer cells and they are coming from either the bone marrow or some other site. So, today, Mom will be getting a CT body scan and fairly soon a blood marrow biopsy.

I know this sounds rough (and it is) but I am confident that there are a number of treatments that can attack this blood cancer and give Mom a full life. We all need to be strong for her and keep her spirits up -- if you can't talk to her on the phone w/o crying, send her a note until you can. Prayer and positive thinking with strong family support is the thing that beats cancer.

I don't know much else as of this morning. We had a good cry yesterday afternoon and we are now prepared to help craft a medical plan and start a best therapy for her as soon as possible.

Now this is a preliminary thinking -- NOT a final diagnosis. If you want to check out what I think it is look up "multiple myeloma" (see www.webmd.com and/or www.mayoclinic.com )

Mom and I send our love (and I will keep you informed as to what goes on today with the med team)


January 8, 2008 (later)

No info so far, when we do I will send out a report to family. she did a body x-ray this morning... still waiting to hear from hematology... she is in good spirits -- reframing things -- sounding positive outside and then recording a 167/103 BP to show what's going on inside.

We all had a good cry yesterday and I told Buddy last night and had another cry.... this will work out -- no things may never be as they were but they can be different and even be better!

January 7, 2008

Okay... Sabine had a good night and the itching is down. She seems much energized and took a walk. When we got back to our room the coordinating doc was there with the first news from biopsy lab work.

It looks like this is NOT a kidney disease or interstitial nephritis but rather some kind of immune system problem. What is happening is that "B cells" have gravitated to the kidneys jamming them up and raising the BP -- a protein buildup.

Worst case projection? Blood disease/cancer like myeloma.

They are now bringing in the hematology team and will be doing more blood and urine work.

This is a crushing downturn right now --- accelerated prayers are in order.



January 7, 2008 (later)

I am placing my bets on monoclonal gammopathy.

Hematology doc is on same track but more and more tests are going to be run...

They talked about possibility of a bone marrow biopsy...



January 7, 2008 (even later)

I am thinking multiple myeloma from the Mayo webpage...



January 7, 2008 (much later)

The good news is that Sabine does not have kidney disease.

The bad news is that it appears to be a cancer of the white blood cells -- multiple myeloma.

A bad day....

January 6, 2008

Sabine slept fairly well.

Rash remains (looks like she's got the measles). Itching fairly controlled.

Swollen eyes -- less so now

Blood pressure stable overnight (140s/high 70s)

Creatinine up -- 6.1 (from 6.0)

BUN up -- 47 (from 34)

January 5, 2008

I stayed at the hospital last night to make sure there were no complications from the biopsy and Sabine's BP problems. Thankfully, she had a fairly good night because they finally got her blood pressure somewhat under control. (Low 140s/low 70s). The renal doc came in this morning and was happy, as we were, that there were no complications yesterday or last night.

We sense tension between our health coop and the kidney specialists about how long Sabine should be in the hospital (welcome to our crazy healthcare system!) The kidney guys understandably say they want to keep her until they find out what's really going on. They remind us that Sabine has only 10% of her normal kidney function. Then I remind our docs from our coop that I don't particularly like to have to make ER runs in the early hours because Sabine's high BP drives nauseating headaches.

So the good news is that the biopsy went well and the labs will take a couple of days to process the tissue specimens and Sabine is sitting up and feeling a little better. Dr Chan, the kidney specialist, is convinced that her problem is one of two things and both will respond to steroid treatment (prednisone) which she will begin today.

The bad news is that her creatinine level indicating kidney failure remains high (6.2) and rose a bit from yesterday. There is fear that this indicates some permanent damage to the kidneys. And Sabine needs to continue her hydration via an IV; she needs about 5 liters of water a day to make sure she does not get dehydrated which will further complicate the kidney problem and it is difficult to drink that much water orally each day. The other bad news is that she is now getting a skin rash reaction possibly because of one of her blood pressure medications which were working (metoprolol or clonadine).

As of noon today, I plan on conducting services at St Peter's tomorrow, The Feast of the Epiphany (at 7:30 and 9:30) and then return to the hospital.

Stay tuned. Keep your prayers coming and thanks for all your concern and offers of help (including two kidney offers!).

January 4, 2008

EXTRA BULLETIN: The renal doc just came in and he said that they used an alpha blocker last night called "clonadine" and it dramatically reduced her BP and knocked it down into the 140s/80s for the first time this week!

The creatinine level remained steady at 6.0. (good!)

I asked the doc who will do the biopsy if he had a good night rest and if his hands were steady this morning -- he replied in the affirmative!! Prayer needed (me, too!)
Procedure time is set for 10:30 am.


January 4, 2008 (later)
Successful biopsy!

Dr Chin reports that Sabine had a successful biopsy. She was back in her room in less than an hour!

Rest -- bed rest ordered for the next 6 hours.

Creatinine level still too high for her to go home tomorrow. Sunday? Or Monday?

Thanks be to God for the knowledge and skill that has developed by God's people within God's creation!


January 4, 2008 (afternoon report.)

Blood pressure stable (140s/80s)
No blood in urine.
No bleeding at biopsy site.
Resting comfortably watching "Law and Order"
Bossing me (she IS feeling better!)

The Plan:
1. Get creatinine level below 6.0 (6 means the kidneys are functioning at 10% of capacity).
2. Keep her hydrated so as not to get into dehydration problems which will compound the matter.
3. Get blood pressure regulated.
4. Find out what caused all this...

January 3, 2008 (later)

Well, folks, the renal team has made a recommendation (and we have agreed) that she should undergo a biopsy to further checkout this problem. She is scheduled for this procedure tomorrow morning. It is a procedure that is not without some risk, but we are hopeful (and prayerful) she will not be one of the "one-percenters."

In the meantime, the med staff is working on getting her blood pressure down and properly hydrated for tomorrow's procedure.

Thanks for your prayers and concern -- keep 'em coming!

January 3, 2008

January 3, 2008

Dear Family and other Friends:

Well, things are looking a little better. I got sent home last night for a shower and a few hours of sleep. This occurred after we met with the renal team, got Sabine's meds changed and were convinced by the team leader that I should not worry right now about the high blood pressure.

So... things are getting better.... slowly... Sabine's blood pressure remains fairly high, the creatinine level has dropped somewhat, and she feels more energetic (comparatively).

[Now for a special report for Sabine's sister, Barbara, no, she's not a medical practitioner, but for those who know and love her, she is very inquisitive and rather than have a long career as a teacher, she should have been a reference librarian in New York City..

[Creatinine level: currently at 6.0 (yesterday was 6.1 and a couple days ago was at 6.7).
[BUN: .34 (two days ago it was .47).
[Blood pressure meds: switched from 240+ mgs of diltiazem to 50 mg metoprolol twice a day (a beta-blocker).
[Blood pressure range yesterday and last night: 160s/90s

[The plan is to keep hydrating her with IV solution, letting the kidneys rest and getting the BP controlled at a lower level than it currently is holding by slowly increasing the metoprolol.

[There are also some esoteric blood and urine tests that are being conducted by some nationally based labs in other states that will take a few days to process and return the results.

[Now for the rest of you (and Barbara, too) we both thank you for your prayers and loving thoughts. Sabine is still not up for visits, but feel free to send me an email and I will deliver it.]

January 2, 2008

Now I have a chance to practice what I preach -- "Don't ever enter the healthcare system without a loved one (or someone to serve as an advocate) with you."

This has never been more important than it has for these past two weeks! Sabine is not getting any better -- in fact, I believe she is getting worse -- splitting headaches, nausea, lack of sleep and this perplexing high blood pressure (BP)..

The night before last (New Year's Eve) I went home to get some sleep with the understanding from her care team that her blood pressure (which hit sky-high yesterday afternoon -- 210/100) and then stayed in the 160s/90s) would be monitored through the night. I found out in the morning that they took her BP at the start of the night shift and then not at all during the night. Thankfully nothing happened and she was able to get some sleep after the previous emergency room and hospital admission the day before. So I stayed in the room last night and was an extra "duty nurse." I checked on her and her blood pressure about every 2 hours between my catnaps. The BP remained in the 160s/90s (there was an emergency plan if it was to go over 170 systolic thanks to a member of the renal team).

We have had a lot of specialist MDs in this morning and I am confident they are working on a strategy to find out why a blood pressure controlling medicine (diltiazen) would cause the raising of a patient's BP. I am confident that some inquisitive and experienced brains are working on this problem to control her BP -- they are looking at a beta blocker as an alternative prescription. A kidney biopsy may be down the road.

Needless, to say, all this is very troubling and worrying. I got a little sleep last night and am planning on staying the course. Thankfully, I don't have a busy schedule this week and my beloved parish handled the Sunday liturgy last week.

What's the worst that can happen? As I "google" "acute kidney failure" it looks like the way these things are handled is to try and give the kidneys and rest by keeping the BP as low as possible and the patient comfortable so that the kidneys can heal themselves... absent that and the possibility of a chronic condition, dialysis could be a part of our life -- but we can live with that -- some big changes in our life but considering the alternative we will take it.

I know you are all as concerned as I am and I will do my best to keep you all informed. It is best not to call Sabine/Mom via phone. I will rely (as I already have) your email's of concern and your gifts of prayer. Let me remind you that prayer works! She feels your love and your "lifting up" and that is so important. In all these pain and anxiety we both feel the loving presence of God and are thankful for your prayers and God's "refuge and strength!"

From the trenches of the med care system,

December 30 (later)

It is Sunday morning and we are in the ER room again. High blood pressure, headache and vomiting due to the high BP. This time they are going to keep her and admit her. Keep the prayers coming. Will keep you all up to date as soon as I learn more.

The Cancer Struggle Begins: December 30, 2007

December 29, 2007 Some of you may know that Sabine (Mom) has ran into some kidney problems just before Christmas. It all began with an intense headache caused by an extremely high spike in her blood pressure on 12/17 causing nausea and vomiting. We ended up in the UW Hospital Emergency Room for most of the day. They got her stabilized and released that evening. Upon her release the doc in the ER noticed a high creatinine level (around 2) indicating kidney malfunction. She was also released with some blood pressure medicine and a diuretic. We followed up in two days with Sabine's primary care doc after monitoring her blood pressure at home. We then found during our clinic visit that the creatinine levels in her blood work were even higher than before (around 4) and that Sabine was now experiencing extreme lethargy, some head aching and light-headedness. Just after Christmas she had a near-fainting episode while sitting down at the movie theater. This caused her primary doc to change her blood pressure medicine to diltiazem. This relieved the light-headedness and still controlled her high BP. After more tests later that week finding a creatinine level at 6+ we ended up in the ER again last night to try and stabilize her symptoms and decide how we are going to negotiate this rising creatinine level between now and next Thursday when she meets with a nephrologist (kidney specialist). So last night we were able to meet and consult with the on-call nephrologist at the UW hospital ER, take do more tests and then we decided that she can come home with close monitoring (seeing there is most likely little that can be done in the hospital between now and next Thursday). However, if she were to experience any head aching, nausea, more fatigue, trouble breathing, or swelling, she should return to the ER. The specialist believes the "best-guess" now is pointing to ibuprofen. There is much in the literature showing that ibuprofen can cause acute renal (kidney) failure. And the best recovery is to stop taking ibuprofen (which she has now for over 4 weeks [she was taking about 800 mg/day to control a painful bronchitis-like cough -- this was checked out at the clinic at the time, lungs x-rayed, and sent home to mend]) and to let the kidneys recover (which they usually do). If the creatinine levels get up to 10 then dialysis (a machine to filter the body's blood in lieu of malfunctioning kidneys) would be in order. Even after dialysis, the kidneys can still recover and not go into chronic (long-term) kidney failure. So, that is where we are at. But other more sophisticated tests are being run even though ibuprofen is being highly suspected at this time. However, Sabine must be quiet and REST at home and let God's work be healed. We ask your prayers in the meantime and know that you are concerned and love and care for her as I do. I will keep you all posted. We got home last night around midnight and just tumbled into bed...