After a relatively mild week and a nice hour-long walk yesterday, the growth hormone (neupogen) in which I had been injecting Sabine all week long kicked in shortly after midnight. Tylenol was not handling the deep pain Sabine was experiencing in her back and hips as the bone marrow starting getting rejuvenated! Thanks to the Kwik Trip all-night gas station in Cross Plains, I was able to get some ibuprofen (which the nursing staff said was better for bone pain control) and it did the trick! Sabine got a good night's sleep, went to Madison for labs early this morning while I set up the blood laundry machine (dialyis).
We talked with Jan, our stem cell coordinator and, as we thought, this was a good, albeit painful, sign. Neupogen continues and possibly tomorrow or Wednesday for the "harvest."
One of the problems I have as Sabine's caregiver and loving her so deeply(and we have joked about this for years) is my "sympathetic responses" to her symptoms.
Hmmm, I wonder when the pain in my hips and back might start?
So, still praying and remaining calm...
It will get tougher but, we can do this, we can! And with God's help and your prayers, we will!
Monday, March 30, 2009
Sunday, March 29, 2009
Waiting
Sabine still continues to tolerate the chemotherapy very well. So, she "masked up" and we went off to church this morning. But first we shoveled three inches of snow off the walk and the car! This is spring? After church we headed down to Madison and the lab to draw Sabine's daily blood work. Stopped for a coffee and are now back home dialyzing and waiting to get a call from U.W. hospital to see if tomorrow is "harvest" day or not.
Friday, March 27, 2009
Day 8 (I think)
This week has gone remarkably well. Sabine is tolerating the chemotherapy very well and continues to exercise every day! (She read an account of a physician who was a distance runner and continued to "get out" every day -- run/walk -- just get out! And I am sure this has influenced her.
We started daily labs this morning to check the blood counts. If all goes well we should go in for "harvesting" on Monday or Tuesday.
I did the Marriage Course by myself (The joke: "Well, folks, I am here by myself to talk about 'Good Sex!' Sabine sent me by myself!") All went well, but, as they say, it's a lot easier and more fun to have a partner!
We are getting a snapshot of the future as our friend, Darlene, and her husband, Tony, is 30 days ahead of us. When Sabine checked into the hospital, Darlene received her chemotherapy (melphalan) prior to her stem cell infusion. We get blogs from Darlene and today she is very, very tired as her white blood count (WBC) was just about zero!
So, that's the mid-week report. Stay tuned. Be good to one another...
We started daily labs this morning to check the blood counts. If all goes well we should go in for "harvesting" on Monday or Tuesday.
I did the Marriage Course by myself (The joke: "Well, folks, I am here by myself to talk about 'Good Sex!' Sabine sent me by myself!") All went well, but, as they say, it's a lot easier and more fun to have a partner!
We are getting a snapshot of the future as our friend, Darlene, and her husband, Tony, is 30 days ahead of us. When Sabine checked into the hospital, Darlene received her chemotherapy (melphalan) prior to her stem cell infusion. We get blogs from Darlene and today she is very, very tired as her white blood count (WBC) was just about zero!
So, that's the mid-week report. Stay tuned. Be good to one another...
Tuesday, March 24, 2009
Day Four
So far... so good. Sabine is experiencing minimal nausea and seems to have her usual unbounded energy. She is tolerating this round of preparatory chemotherapy quite well, though she won't be at her "low point" (neutropenia) until Thursday or Friday. At about Day 8 or so, if all goes well, she will go back into the hospital for a session of stem cell harvesting (apheresis). The transplant staff stays in touch with her, I inject two shots of growth hormone (neupogen) and we start daily lab work on Friday.
At about Day 30, she will go back into the hospital, take an enormous hit of chemotherapy (nasty, but effective, melphalan)and then be infused by the stem cells harvested earlier. At that time, she will be in relative isolation at the U.W. Hospital for about three weeks as those stem cells are "engrafted." About 10 to 14 days after infusion the stem cells start to produce new blood cells.
Our job now is the continue dialysis and work to prevent any infections.
Stay tuned...
At about Day 30, she will go back into the hospital, take an enormous hit of chemotherapy (nasty, but effective, melphalan)and then be infused by the stem cells harvested earlier. At that time, she will be in relative isolation at the U.W. Hospital for about three weeks as those stem cells are "engrafted." About 10 to 14 days after infusion the stem cells start to produce new blood cells.
Our job now is the continue dialysis and work to prevent any infections.
Stay tuned...
Sunday, March 22, 2009
Day Two
Sabine had a somewhat uneasy night with the chemo drip plus some other drugs to help the process. We left the hospital yesterday at about 3 p.m. and when we got home Sabine was able to eat. Not much nausea yet. But during Friday night she decided to shed her beautiful silver-grey curly locks. Back to being baldy for a while!
This morning she said she slept fairly well and is even thinking about masking up and going to church!
Obviously the chemo has not kicked in yet!
This coming week is daily lab tests and my twice-daily injections of neupogen. In about 8 days she may be ready for the stem cell harvesting. Think strong stem cells and lots of them!
Will keep you all posted during this tense week.
Love and blessings from both of us!
Thursday, March 19, 2009
It Looks Like a "Go!"
I know some of you have been anxiously checking this blog as to how Sabine's tests turned out. We, too, have been anxiously awaiting a call from the transplant coordinator. Well, last night we did. And it's a go -- and a fast one at that! Sabine goes into the hospital for the first phase of an autologous stem cell transplant tomorrow morning (Friday). In the next month or so we will be drastically changing our life routine.
But first I feel a need to share this lovely poem as a "preface" by Pablo Neruda which has been translated by Nicholas Lauridsen...
Soneta de la Noche
(Sonnet of the Night)
When I die,
I want your hands upon my eyes:
I want the light and the wheat
of your beloved hands
to pass their freshness over me
one more time:
I want to feel the gentleness
that changed my destiny.
I want you to live while
I wait for you, asleep.
I want your ears
to still hear the wind,
I want you to smell the scent
of the sea we both loved,
and to continue walking
on the sand we walked on
I want all that I love
to keep on living,
and you whom I loved and sang
above all things
to keep flowering
into full bloom,
so that you can touch
all that my love provides you,
so that my shadow may pass
over your hair,
so that you may know
the reason for my song.
Now for the journey ahead... and the preparation for the stem cell transplant...
Sabine will go into U.W. Hospital tomorrow and receive cytoxan as an initial chemotherapy. She will most likely stay in the hospital overnight. Then we will return to the cottage. This first phase will try and knock out more of the cancer cells -- a massive dose.
Her immune system will be severely repressed during this time and we will essentially be living at our cottage in Mazomanie for therapeutic and sanitary reasons. I will be injecting her with a drug called neupogen to stimulate her bone marrow cells (in which the cancer resides). The cytoxan will also cause her wonderful gray curly hair to fall out again. I told her that I was hoping this time she could be a red-head -- you know, like Maureen O'Sullivan, Rhonda Fleming or even Bette Midler!
A period of about a week or more will transpire before she goes into the hospital again for the purpose of spinning stem cells out of her blood (phoresis). The stem cells will be harvested and then stored.
Sabine will return home and wait for a period of time. During this period she will be "neutropenic;" that is her white blood cells and immune system will be sorely depressed and she will be greatly susceptible to infections.
At the same time, we will be doing home hemodialysis and watching very carefully any rise in her temperature which could indicate an inflection brewing. Obviously Sabine should not be in any crowds nor around anyone who has a cold or other infection. The same will be for me; that I need, as her caregiver, to keep myself free from a cold or infection and be careful about public contacts.
Then, at a time to be determined, Sabine will return to the hospital and be given an even more powerful chemo-- melphalan -- to knock down her immune system and cancer cells once more.
It is at this time that she will be re-infused with her harvested stem cells and then kept in isolation in a special unit within the hospital for a period of two to three weeks as the implanted cells have a chance to flourish and grow. It is at this time that she will be most vulnerable to infections. Unfortunately, we cannot be home at this time because of the special risk she has due to her kidney failure.
Sabine's sister, Barbara, has offered to come up from Missouri during the critical stages to help us out just like she did a year ago when Sabine was hospitalized.
If you wish to know more (and my explanation may be medically off a bit) please look at my earlier blog which gave reference to some web sites on stem cell transplanting.
As you can imagine, all this is a little more "dicey" because of Sabine's kidney failure, her tunnel catheter, and need for dialysis.
Both of us will need your prayers. The outcome we seek is a hardy, growing transplant of stem cells which will "elbow out" the cancer cells. If things go well, Sabine could be off chemotherapy for a year or so and have a much better quality of life. This would enable her fistula to be connected in her arm and get the catheter removed from her neck (it could cause problems and be a source of infection in the future). Who knows, swimming and kayaking could be something she can do again in the near future.
Needless to say, this is an extremely scary time for her and for me. I do worry. A lot. And I try not to let the fear control my life. We both are grateful for all of you who continue to pray for Sabine and/or send her "good vibrations!"
I will keep the blog updated as to how we are doing. In the next month or so you may not see much of us...
P.S. If you are interested in knowing more about stem cell transplants there is this is from the Multiple Myeloma Research Foundation website:
"Autologous stem cell transplants refer to stem cells that are collected from an individual and given back to that same individual. Autologous transplants are also referred to as autografts and are by far the most common type of transplant performed in myeloma patients today. With this type of transplant, the patient's stem cells are obtained prior to high-dose chemotherapy, frozen, and stored if necessary, and are then given back afterward.
"Several studies have shown that high-dose chemotherapy with autologous stem cell transplantation improves the response rate, event-free survival and overall survival in myeloma over that obtained with conventional chemotherapy..."
You can read more at http://www.multiplemyeloma.org/treatments/3.03.02.php
But first I feel a need to share this lovely poem as a "preface" by Pablo Neruda which has been translated by Nicholas Lauridsen...
Soneta de la Noche
(Sonnet of the Night)
When I die,
I want your hands upon my eyes:
I want the light and the wheat
of your beloved hands
to pass their freshness over me
one more time:
I want to feel the gentleness
that changed my destiny.
I want you to live while
I wait for you, asleep.
I want your ears
to still hear the wind,
I want you to smell the scent
of the sea we both loved,
and to continue walking
on the sand we walked on
I want all that I love
to keep on living,
and you whom I loved and sang
above all things
to keep flowering
into full bloom,
so that you can touch
all that my love provides you,
so that my shadow may pass
over your hair,
so that you may know
the reason for my song.
Now for the journey ahead... and the preparation for the stem cell transplant...
Sabine will go into U.W. Hospital tomorrow and receive cytoxan as an initial chemotherapy. She will most likely stay in the hospital overnight. Then we will return to the cottage. This first phase will try and knock out more of the cancer cells -- a massive dose.
Her immune system will be severely repressed during this time and we will essentially be living at our cottage in Mazomanie for therapeutic and sanitary reasons. I will be injecting her with a drug called neupogen to stimulate her bone marrow cells (in which the cancer resides). The cytoxan will also cause her wonderful gray curly hair to fall out again. I told her that I was hoping this time she could be a red-head -- you know, like Maureen O'Sullivan, Rhonda Fleming or even Bette Midler!
A period of about a week or more will transpire before she goes into the hospital again for the purpose of spinning stem cells out of her blood (phoresis). The stem cells will be harvested and then stored.
Sabine will return home and wait for a period of time. During this period she will be "neutropenic;" that is her white blood cells and immune system will be sorely depressed and she will be greatly susceptible to infections.
At the same time, we will be doing home hemodialysis and watching very carefully any rise in her temperature which could indicate an inflection brewing. Obviously Sabine should not be in any crowds nor around anyone who has a cold or other infection. The same will be for me; that I need, as her caregiver, to keep myself free from a cold or infection and be careful about public contacts.
Then, at a time to be determined, Sabine will return to the hospital and be given an even more powerful chemo-- melphalan -- to knock down her immune system and cancer cells once more.
It is at this time that she will be re-infused with her harvested stem cells and then kept in isolation in a special unit within the hospital for a period of two to three weeks as the implanted cells have a chance to flourish and grow. It is at this time that she will be most vulnerable to infections. Unfortunately, we cannot be home at this time because of the special risk she has due to her kidney failure.
Sabine's sister, Barbara, has offered to come up from Missouri during the critical stages to help us out just like she did a year ago when Sabine was hospitalized.
If you wish to know more (and my explanation may be medically off a bit) please look at my earlier blog which gave reference to some web sites on stem cell transplanting.
As you can imagine, all this is a little more "dicey" because of Sabine's kidney failure, her tunnel catheter, and need for dialysis.
Both of us will need your prayers. The outcome we seek is a hardy, growing transplant of stem cells which will "elbow out" the cancer cells. If things go well, Sabine could be off chemotherapy for a year or so and have a much better quality of life. This would enable her fistula to be connected in her arm and get the catheter removed from her neck (it could cause problems and be a source of infection in the future). Who knows, swimming and kayaking could be something she can do again in the near future.
Needless to say, this is an extremely scary time for her and for me. I do worry. A lot. And I try not to let the fear control my life. We both are grateful for all of you who continue to pray for Sabine and/or send her "good vibrations!"
I will keep the blog updated as to how we are doing. In the next month or so you may not see much of us...
P.S. If you are interested in knowing more about stem cell transplants there is this is from the Multiple Myeloma Research Foundation website:
"Autologous stem cell transplants refer to stem cells that are collected from an individual and given back to that same individual. Autologous transplants are also referred to as autografts and are by far the most common type of transplant performed in myeloma patients today. With this type of transplant, the patient's stem cells are obtained prior to high-dose chemotherapy, frozen, and stored if necessary, and are then given back afterward.
"Several studies have shown that high-dose chemotherapy with autologous stem cell transplantation improves the response rate, event-free survival and overall survival in myeloma over that obtained with conventional chemotherapy..."
You can read more at http://www.multiplemyeloma.org/treatments/3.03.02.php
Tuesday, March 10, 2009
Ready to Roll!
It looks like things are now underway. Bridget called Sabine t
oday and set her up for some of her needed tests beginning this Friday. The big one is another bone marrow biopsy which Dr Walter Longo is scheduled (see pic).Sabine and I are currently in our 4th week of teaching the Marriage Course at St John's in Mazomanie.
So, things are moving again. Keep Sabine in prayer.
I also wanted to add another pic. A picture of us with one of our favorite persons, Helen Phelps, whose 90th birthday party we attended at St John's in Portage last month on the 22nd!
Waiting
Well, it's been almost two weeks since we have seen Dr Sheehan and three weeks since we have seen Dr Longho. We need to complete about five tests before Sabine can be considered to be an acceptable candidate for a stem cell transplant (from her own stem cells).
In the meantime, her cancer numbers climb each week. So we are hoping and praying that the intervention she has is the stem cell transplant and not having to go through another cycle of chemotherapy.
Presently, we are waiting this week to hear back from Bridget, Dr Longho's scheduling coordinator. Seems like the system is very busy, and phone tag is going on. We hope and pray all this comes together. In the meantime, we wait and grouse about this cold, rainy, sunless weather that has descended upon southern Wisconsin.
Otherwise, Sabine is feeling well... exercising and enjoying a visit from her niece, Teak Nelson, and her two wonderful kids, Seger and Malea.
In the meantime, her cancer numbers climb each week. So we are hoping and praying that the intervention she has is the stem cell transplant and not having to go through another cycle of chemotherapy.
Presently, we are waiting this week to hear back from Bridget, Dr Longho's scheduling coordinator. Seems like the system is very busy, and phone tag is going on. We hope and pray all this comes together. In the meantime, we wait and grouse about this cold, rainy, sunless weather that has descended upon southern Wisconsin.
Otherwise, Sabine is feeling well... exercising and enjoying a visit from her niece, Teak Nelson, and her two wonderful kids, Seger and Malea.
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