Wednesday, May 27, 2009

T Day +27

Yesterday we went for our weekly post-transplant checkup and the blood work was.... EXCELLENT! Sabine's cell counts were up and in normal range, good white blood cell differentiation, and electrolytes were up, too! (I sort of predicted this outcome based on one thing, on Memorial Day Sabine wanted to go out to eat. Now that's a big improvement. So we sat outdoors at the Blue Spoon Restaurant in Prairie du Sac overlooking the Wisconsin river and had a bite to eat.

I think Monday was the day she started to "normalize" after the transplant. Our Nurse Practitioner Blythe reminded us yesterday that everyone reacts a little differently to a stem cell transplant and Sabine (being "Wonder Woman") just thought that she should be off and running with little impact -- wrong!

So here we are this rainy spring day in Wisconsin feeling much better about everything and very thankful, too. No fever, appetite coming back, walking again, energy slowly coming back... Life is good!

Monday, May 25, 2009

Poetry and practice

This is Memorial Day -- a day to remember to give thanks to those who serve and have served in our nation's military (remember, its not about war, but about the warriors!).

Yesterday I agreed to help out at our local church -- our young pastor had one of his beautiful children come down with the H1N1 virus so I took all three services (please pray for Pastor Rob's family and others who are combating this virus).

Sabine stayed home (as she must) and rested (and I used a lot of Purell hand sanitizer and preached about "the resurrection of the body." (Thanks for N.T. Wright's helpful work on the subject, Surprised by Hope: Rethinking Heaven, the Resurrection, and the Mission of the Church!).

Compared with last Monday, Sabine is greatly improved -- remember, I am not comparing day to day progress anymore, it's too difficult; so I have shifted to week to week progress -- and feeling better about it already!

Tomorrow we get another post-transplant checkup at UW hospital and Sabine is starting to get back into a daily routine, eating a wee bit more, suffering less nausea and (most importantly) no fevers! Things are looking up.

A couple of poems about aging and thankfulness...

i look
at this
strangely mine
i see
the hand
of an old man
veins, spots and
and growth lines
like the back of
the old leathery turtle
which lives
near our
the ancient layers
of the sedimentary rocks
which surrounds
our valley
warmly hold
the woman
with whom
i live
and love
and have my being.


i rejoice
did i tell you?
i’m thankful
did i forget?
you know me, god
you know
i pray in distress
you know
what i do
when you help
when you work
it all out
you know
my brokenness
i think
perhaps was me
and not you
you still
hang around
when i
am in distress
you will wait
give me time
to realize it
was you
hear my prayer
(once again)
to be more
and to rejoice
with all my
just as my namesake
in front of your arc
so very long ago.

Saturday, May 23, 2009


I think we are going to have to "re-frame" our situation.

We are not going to have improvement daily (I think we had expected that), but rather weekly. So it is not "how am I feeling today compared to yesterday?" but rather "how am I feeling today compared to this day last week?"

We were able to get the potassium and magnesium levels raised and I think it made a big difference. I sense improvement in energy... but she still is not eating as much as she should -- we have a variety of foods and methods we are trying.

So, we move on with the expectation of full recovery and going back to the last eight months we had without chemotherapy and a life restricted only by dialysis (which we are doing quite well with here at home!).

Thanks for your cards, letters, prayers and good thoughts!

Thursday, May 21, 2009

Ups and Downs

First the good news (may I always do so)! We seem to have the temperature under control with two days of normal temps.

The bad news is that when we took our dialysis labs on Monday we got a semi-emergency call regarding Sabine's plummeting potassium and magnesium levels. We had to make a late afternoon pharmacy run for a supplement that was available only in huge pills. Getting the pills to stay down was an ordeal.

The next day we went in for more lab tests and, again, received a late afternoon call and had to make another pharmacy run to Madison. This time, thankfully, I was able to get the supplement in powder form.

All these ups and downs take its toll on stem cell transplant patients who ordinarily feel crappy.

The key is taking the problems one at a time, working through them and then (as we teach in the Marriage Course) to always keep problems out in front of you and not as a divider between you!

The weather has been great. While Sabine's exercise program has been severely curtailed, she still gets out for a short walk and time in the warm sun.

Better days are ahead. Right, God?

Tuesday, May 19, 2009

Feeling Better!

Sabine's sister and husband (Barb and Ken) headed back to Missouri this morning (a good sign that Sabine is on the mend).

The fever seems to have broken (and is staying away) and Sabine actually ate a WHOLE scrambled egg and some fruit this morning for breakfast.

She is looking forward to seeing our pup. Mocha, this afternoon for a walk in the woods. (Mocha was on the post-transplant "quarantine" list and is now acceptable for petting -- with post-hand-washings!)

Life is looking better!

Monday, May 18, 2009

Good News!

IT WAS A GREAT DAY AT THE CLINIC (making it an even greater day at home tonight!)Tem



3. HEMATOLOGY -- White blood cells, hemoglobin and platelets all looking well.

We think that Sabine now is on the upswing! The temperature she has been experiencing since she left the hospital last week is probably the result of massive cell growth.

God willing, she is on the mend!

Thanks be to God!

Another day at the clinic

After dialysis this morning we will head east to Madison and the cancer clinic at UW Hospital. Sabine's fever continues (although this morning it had dropped a degree or more to 99.5).

Her fever and lack of appetite and energy continues to worry both me and Dr Longo.

We will do our dialysis labs here and then blood work at the cancer clinic. Afterword we will meet with Dr Longo and see what our next step shall be.

I pray for a smooth flowing and uneventful day and remind myself of Sabine's saying that a bad day in clinic is always better than a good day in the hospital -- at least until you are really sick...

Saturday, May 16, 2009

Fever Continues

The nasty fever persists.

But, as Sabine says, "The worst day in the clinic is better than a good day in the hospital!"

After morning dialysis yesterday we went to the cancer clinic at UW Hospital for more tests. We got there at about 10:30 a.m. and left at 4:30. In the meantime, we waited, were moved around, had blood drawn, had blood drawn again (Sabine must have felt like a pin cushion by the end of the day.)

The blood tests (both peripheral and catheter)still were negative.

Because the antibiotic she was given two days ago (vancomycin) can be dialyzed off, she received another IV dose. Dr Longo also prescribed another antibiotic (cefpodoxime) to be taken orally after dialysis. (I can see some of the complications of stem cell transplants with dialysis going on at the same time!)

Nevertheless, the fever continues (ranging from low 100 to 102 degrees)and remains an "unspecified origin." I continue to worry about the tunnel catheter as a source, but so far the blood draws are negative.

Sabine is starting to eat (a little), keeping herself hydrated, and is sleeping well. I will watch her temperatures over the weekend, skip dialysis today to give the antibiotics time to work, resume dialysis on Sunday and then go to the cancer clinic on Monday.

Sabine does not want to have to go back into the hospital, so she is telling Dr Longo that she is willing to spend all day at the out-patient clinic in order to go home to bed at night. So far, so good.

My prayer is that this fever would go away and Sabine would start feeling better. Please make it yours, too. Thanks!

Friday, May 15, 2009

Home, but not quite free yet!

The elevated temperature came back. We took more blood tests and saw Dr Longo yesterday in Madison (we will repeat this routine again today after dialysis). So far, none of the blood cultures are positive, but some will take longer to incubate.

Sabine's temp ranges from 100 to 101 degrees. She still has yet to regain her appetite. But we are thankful Dr Longo trusts me to be the nurse -- and, so far, we have so far successfully avoided a re-hospitalization!

According to Dr Longo, Sabine should be feeling better now. She still remains feeling like that Mack truck came back around the block and sideswiped her her again. The worry we all have is that there may be an infection in her tunnel catheter which is quite close to her heart. But as I said, the first cultures of the catheter came back negative.

She and Barbara got out for a walk yesterday and Sabine sat for a while on our deck in yesterday's warm sunshine.

Keep us in your thoughts and prayers as we head east to Madison and the Cancer Clinic.

Thursday, May 14, 2009

A Good Night and Looking Forward to a Better Day!

Sabine did NOT want to go back and get admitted to the hospital yesterday! So, Dr Longo let her come home after a real big dose of broad-spectrum antibiotics. THE FEVER BROKE LAST NIGHT!

We have an appointment this morning back at the hospital for more blood tests and a re-checkup. Dialysis this afternoon at home and that's our day!

Sister Barbara and husband, Ken, are still here helping us get settled in our cottage. The main thing now for Sabine is hydration and nutrition (in that order). She is still pretty weak but as we all know -- a real fighter!

Wednesday, May 13, 2009

Danger Zone

Well... we almost made it a full day at home until Sabine's temperature started to spike late in the afternoon. A run to UW Hospital, blood tests, and antibiotics... almost a re-admission, but I convinced Dr Longo that after they administered the antibiotics I could take care of Sabine just as well at home... so, we will watch her temperature and the possibility of an infection this evening.

We are scheduled to return to UW Hospital in the morning for more blood tests and an investigation into the infection. I sure hope it is not the tunnel catheter... but with all this chemo and repressed immune system, infections are part of the package.

Not out of the tunnel yet!

At Home

Today is going to be our first full day at home!

I have not forgotten how to be a dialysis nurse again.

Here are some thoughts on our 15 days at UW Hospital (and with thankful and grateful hearts we congratulate the nursing staff at 6 East and Dr Walter Longo!

A Poem

you descended
into a sealed
plexiglass pipe
i ran
are you okay?
what can i do?

to listen
try to read
but in your pain
and isolation
i am outside
i cannot stand

but now
we are home
still weak
still hurting
yet home
slowly as
we settle down
our and
plexiglass tube
and i can

Tuesday, May 12, 2009

T Day +12 -- COMING HOME!




During this ordeal I cited the 4th verse. Today the entire psalm fills my heart!

Twenty-third Psalm: A psalm of David

1 The LORD is my shepherd, I shall not be in want.

2 He makes me lie down in green pastures,
he leads me beside quiet waters,

3 he restores my soul.
He guides me in paths of righteousness
for his name's sake.

4 Even though I walk
through the valley of the shadow of death,
I will fear no evil,
for you are with me;
your rod and your staff,
they comfort me.

5 You prepare a table before me
in the presence of my enemies.
You anoint my head with oil;
my cup overflows.

6 Surely goodness and love will follow me
all the days of my life,
and I will dwell in the house of the LORD

Monday, May 11, 2009

T Day +11 -- Eureka!


Yesterday we noticed a slight increase in Sabine's white blood cell count (from zero to .7).

It was a sign of things to come: This morning she had an increase in her white blood cells to 4.7 (normal range from 3.8 to 10.5)! Her neutrophils are at 2914 up from zero (normal range 1700-7500). There is also good activity in other blood marrow cells.

So, those stem cells are starting to KICK IN! (For you medical types out there, her platelets are still low at 37 (normal range 160-370), her hemoglobin rose slightly (but without a transfusion!) from 8.3 to 8.8 (normal range 11.6-15.6).

The throat swelling (mucousitis) has gone down permitting Sabine to eat after three days without solid food.

Dr Longo, and Nurse Practitioner Blythe (see picture), has set some goals for Sabine in order for her to be able to be released home. We hoping it's this week! (Maybe Wednesday?)

As I write this Sabine is getting an ultrasound on her arm -- the one that had a vein blockage a while back after she had a vein and artery hooked up for an eventual fistula for dialysis. The fistula would then replace the tunnel catheter we now use for dialysis. We are hoping this is not something connect with the transplant.

Continuing prayers are needed to keep those stem cells multiplying in the right way, for no infections to occur, and for Sabine to have a successful transplant.

To celebrate this day (Transplant Day +11) I bought Sabine this metalwork character I found in a gift shop. When I saw it I knew immediately that this was MR. STEM CELL. This little bug looks exactly how I would imagine someone animating a stem cell. He will be with us during Sabine's 110 day recovery at home (or he might end up in the yard looking in the window!

This is a joyful day.

P.S. In case you haven't been following all this closely, I have enclosed this primer on stem cell transplants. A successful stem cell transplant in Sabine's case would most likely give her a year or more without having chemotherapy. With multiple myeloma there is no cure at this time. So we talk about managing the disease.

Bone Marrow Stem Cell Harvest

A bone marrow stem cell transplant uses stem cells derived from bone marrow to provide a fresh and healthy source of new blood cells which in turn, allows for a patient to receive higher doses of chemotherapy to treat certain types of cancer such as leukaemia. This ultimately means that a person has a better chance of surviving cancer. The bone marrow stem cells may be allogeneic and therefore donated by a family member of stranger, or they may be autologous, which utilizes a patient's own stem cells. (Sabine is using her own stem cells – autologous.)

Importance of Bone Marrow

Bone marrow is the soft tissue found in the centre of bones. It is here that new blood cells are formed; stem cells are considered the parent cells of these blood cells. Stem cells in the marrow have the vital task of creating a person's three blood cell types. These are:

* Red blood cells: transport oxygen

* White blood cells: fight disease

* Platelets: aid in clotting after injury

Bone marrow stem cells are found in bone marrow and in a person's blood. After stem cells multiply, they form immature blood cells, which are then subject to a collection of changes that allow them to develop into mature blood cells. Once mature, the blood cells migrate from the marrow and are introduced into the bloodstream, where they provide important functions in keeping the body alive and healthy.

Effects Of Chemotherapy On Bone Marrow

Because chemotherapy operates by destroying the fast growing cancer cells, higher levels are generally more effective for killing cancer cells. Similar to cancer cells, however, bone marrow cells grow quickly and are also very sensitive to chemotherapy treatment. The chemotherapy can eventually destroy the marrow completely, which then prevents new and healthy blood cells from developing.

Autologous Bone Marrow Stem Cell Harvest

In an autologous transplant, a patient's own stem cells are used. The problem here is that the patient’s bone marrow and peripheral blood usually have a lot of cancer cells, so isolating stem cells can't generally occur until the patient is in remission.

A patient will usually receive some chemotherapy to reduce cancer cells before stem cells are collected. The harvested stem cells are also treated to ensure that no cancer cells remain. Higher doses of chemotherapy are then given, sometimes alongside complete body radiation, to confirm that no cancer remains. Stem cells are then transplanted back into the body via a rapid injection. Stem cells will eventually migrate to the bone marrow, where they latch onto other cells there and develop into the different blood cells.

Sunday, May 10, 2009

T Day +10 -- More Pics

Some photos that did not make the last blog. In spite of the weather this week which ranged from 75 degrees to 45 and rainy, Sabine got out for a walk (no matter how terrible she felt!) and then a snooze (both of us here).

The bus stop photo was made by sister Barbara who said that she caught Sabine trying to hail a westbound bus! (Yes, she is very anxious to get home and into some familiar surroundings!).

Barbara administers her wonderful foot massages which makes Sabine's hospital life so much easier!

T Day +10 (Mothers Day)

A special Mother's Day gift for Sabine: her WBC (white blood cell count) went from less than 1 to .7 -- that means something positive is happening in the bone marrow. We are excitedly waiting for tomorrow's labs!

Still nothing to eat for Sabine (3 days now) but she is getting her hydration by an IV. Oxygen use is back to normal so no more O2 hookups!

Mother's Day contacts (cards, phone calls and pictures) from the kids (and granddaughter, Taylor) made her day and perked her up when I got back from leading worship this morning at Trinity Episcopal in Mineral Point.

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Saturday, May 9, 2009

T Day + 9

Went home late.
Sabine called.
Rough night.
Returned to hospital.
Slept in a chair.
Coughing... gagging...
Emergency down the hall.
Lungs clear.
Temperature ok.
Rained all night.
Blood drawn.
Walked outside.
Still on course.
No new cells...

Friday, May 8, 2009

T Day + 8

Still waiting for those stem cells to kick in...

Sabine is still pretty weak but gets out daily for her walk despite the extreme inflammation in her throat which prevents her from eating, low-grade fever and jumpy bowels. She gets her hydration now intravenously.

In addition, she has had both blood and platelet transfusions to keep her strength up. She also receives a human growth hormone daily to invigorate cell growth.

Nevertheless, Dr Longo and able crew feel everything is going as it should be as her blood numbers are just about zero. So, wait.

Her daily labs will reveal when the new stem cells start grabbing hold.

Our nurse and othe medical team members have been simply great!

Thursday, May 7, 2009

T Day +7

We are beginning our seventh day. It's rainy outside and I stayed at the hospital with Sabine last night. I thought this would be tough, but not this tough! And I'm not the patient.

Sabine's "numbers" have crashed, platelets, white blood cells, the whole immune system in order to let the stem cells kick in. In the meantime, she is going through hell. It is so hard to sit here and not be able to alleviate the situation... she is unable to eat any solids due to a swollen throat and she also is suffering from an elevated temperature which we watch with great trepidation as it could indicate a serious infection.

It's just waiting now... and tolerating all this... for a better future.

That gives me hope...

Psalm 23 is still the prayer I say for both of us.

Tuesday, May 5, 2009

T Day +5

After a couple of shaky days (nausea, loose bowels, mouth sores, no appetite, no taste) things started to turn up. Sabine's clinical "numbers" are looking good and progressing downward (as they should be). Today was Sabine's first neupogen injection to stimulate her bone marrow. And dialysis is a bit of a drag (after all, no one can do it better than me, right?).

Sister Barbara is doing a great job in spelling me (as brother-in-law Ken and I do some relaxing visits to REI and Cabella's and begin to scout the elusive trout on the streams near Black Earth).

I have been getting out on my bike and logging a few miles to relieve my own stress!

Good friends stand at the ready. Ah yes, WE CAN DO THIS! YES WE CAN!

Today, Dr Longo mentioned Monday as a possibility -- Sabine is excited, barring a possible infection (which is always possibile) she might be going home on Monday or Tuesday. Wow! That's a week ahead of schedule! God willing!

Sabine remains a real trooper -- exercising, meditating, and just being the wonderful soul that she is. Thank you, Lord!

And so... another day in the tunnel... another day closer to going home... another day of healing... another day of blessing...

Sunday, May 3, 2009

T Day+3

“Yea, though I go through the valley of the shadow of death, I will fear no evil; thy rod and thy staff comfort me…”

The familiar words of the 23rd psalm echo in my head. Transplant Day +3 (what an ordeal for Sabine!)

Our close friends often remark that Sabine and I are “joined at the hip.” When you go through something like this with your beloved, and you are truly “joined at the hip,” it seems that the pain of the beloved becomes your pain. Maybe that’s what the Christian theology of the Cross really means – when one is connected to another, their suffering is your suffering.

Sabine’s sister, Barbara, has been a Godsend (is she really an angel?). She monitors the entrance to Sabine’s room, makes sure the staff is hand-washing, checks lab work, and knows the name of every healthcare worker in the transplant unit! (I don’t doubt that she will soon know the names of the folks who work on the floors above and below Sabine’s!)

Each day for Sabine is a challenge: nausea, loose bowels, swollen mouth and throat as her “numbers” drop each day and the stem cells struggle to reproduce. We are hoping that some recovery will be evident beginning T+5.

In the meantime, keep her in both your thoughts and prayers… We are still in Eastertide – and new life is all around us! Alleluia!

In the hospital room.

Sabine still does everything she can to try and get outside every day for exercise. Here she is at one of the beautiful gardens on the UW campus.

Dr Walter Longo, her attending physician. His healing touch and words have been so important to us along this journey.

Here's a great picture of Sabine with her sister, Barbara (endearingly called, "Nurse Ratchett") on the shore of Lake Mendota, a short walk from UW Hospital.

(Sabine suggested to me this morning that maybe we could say we were going on a walk and then drive to our cottage where she could be in her own bed and get some sleep! Would this be "patient-knapping?")

Saturday, May 2, 2009

T Day +2

i know
the fear and helplessness
i suffer
compared to the
and nausea
you encounter
each of these days since
that day
we know
good will come
of it
but tell me again
how many more days?
in the meantime
my insides grip
and weep
as you lie there
for your resurrection
for new life
waiting to birth
new cells
even crouching
to spring upon
and crush the
cancer demon
invaded you

Friday, May 1, 2009

T-Day + 1

Transplant day plus one! We are on the way d-o-w-n! Sabine's blood numbers are dropping as the chemo takes action. The cells were planted yesterday and in about 7-10 days she should be at her low point and her numbers beginning to climb. Sister Barbara (Nurse Ratchet) has been a great help in relieving me -- Sabine says that I am to REST during this time so I can be raring and ready to go when she comes home from the hospital somewhere between T+15 and T+21.

She has still be exercising by getting a walk in everyday or using the fancy compact exercise equipment daughter Yumi sent to her.

The staff has been wonderful and so we, like farmers, look for the first green shoots that signify a successful planting.

We feel your prayers! Thank you!