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
Thursday, January 31, 2008
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!!
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!!
Wednesday, January 30, 2008
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+
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+
Tuesday, January 29, 2008
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…
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…
Monday, January 28, 2008
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!
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!
Sunday, January 27, 2008
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.
Saturday, January 26, 2008
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!
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