I apologize for the blog absence. It seems as though we repair one problem and then another problem arises. Today, I ask for your focused prayers for my bone marrow and the recovery of my blood counts. For the past three weeks, my blood counts have been on a downward spiral and they have reached very concerning levels. I have required Neupogen injections the past two weeks to improve the severe neutropenia. Today my Absolute Neutrophil Count is only 300.
Our main concern is that my bone marrow could be failing - either from the leukemia or from the radiation I have received. I cannot survive without a functioning bone marrow. When I made the decision to try radiation last fall, I was fully aware of the risks - one being marrow failure - however, the risks of radiation appeared to be less to my medical team and me than the risks of chemotherapy. Difficult decisions to make when there is no good answer.
I request urgent, fervent prayer today that my marrow will be restored and my counts will improve. I ask for prayer that God will supernaturally protect me from life-threatening infections during this time of low white blood counts. I ask for wisdom for my physicians and for God to open a door for me to receive a bone marrow biopsy - what my leukemia expert physicians say that needs to be performed. If I cannot obtain the biopsy locally, I anticipate having to travel to a cancer center in the near future.
I will try to keep the blog updated more this month.
Thursday, March 3, 2011
Monday, February 14, 2011
Reflections on Prayer
I have been reading Andrew Murray's The Ministry of Intercession, originally written in 1898. This book has blessed and encouraged me to focus more time and dedication to prayer. Prayer truly is our link to God and to believe we are too busy or too self-sufficient to need prayer time in our lives, is robbing ourself of a vital necessity.
Some of the quotes that I have highlighted thus far in the book include:
It is only in a life full of the Holy Spirit that the true power to ask in Christ's Name can be known.
Christ actually meant prayer to be the great power by which His Church should do its work, and that the neglect of prayer is the great reason the Church has not greater power over the masses in Christian and in heathen countries.
There must be more definite and persevering prayer.
The law of God is unchangeable: as on earth, so in our traffic with heaven, we only get as we give. Unless we are willing to pay the price, and sacrifice time and attention and what appear legitimate or necessary duties, for the sake of the heavenly gifts, we need not look for a large experience or power of the heavenly world in our work.
If we allow this one matter, unfaithfulness in prayer, to convict us of the lack in our Christian life which lies at the root of it, God will use the discovery to bring us not only the power to pray that we long for, but the joy of a new and healthy life, of which prayer is the spontaneous expression.
It was intense, continued prayer that prepared the disciples' hearts, that opened the windows of heaven, that brought down the promised gift.
Direct, definite, determined prayer is what we need.
Prayer was made of the Church, without ceasing to God for him. That prayer availed much; Peter was delivered.
How clear the two great truths stand out: where there is much prayer there will be much of the Spirit; where there is much of the Spirit there will be ever-increasing prayer. So clear is the living connection between the two, that when the Spirit is given in answer to prayer it ever wakens more prayer to prepare for the fuller revelation and communication.
God still seeks for men and women who will, with all their other work of ministering, to specially give themselves to persevering prayer.
To consider how many years have passed since Murray originally penned these reflections, illustrates how timeless and vital prayer is to each and every generation. May we commit anew today to a life of prayer.
Some of the quotes that I have highlighted thus far in the book include:
It is only in a life full of the Holy Spirit that the true power to ask in Christ's Name can be known.
Christ actually meant prayer to be the great power by which His Church should do its work, and that the neglect of prayer is the great reason the Church has not greater power over the masses in Christian and in heathen countries.
There must be more definite and persevering prayer.
The law of God is unchangeable: as on earth, so in our traffic with heaven, we only get as we give. Unless we are willing to pay the price, and sacrifice time and attention and what appear legitimate or necessary duties, for the sake of the heavenly gifts, we need not look for a large experience or power of the heavenly world in our work.
If we allow this one matter, unfaithfulness in prayer, to convict us of the lack in our Christian life which lies at the root of it, God will use the discovery to bring us not only the power to pray that we long for, but the joy of a new and healthy life, of which prayer is the spontaneous expression.
It was intense, continued prayer that prepared the disciples' hearts, that opened the windows of heaven, that brought down the promised gift.
Direct, definite, determined prayer is what we need.
Prayer was made of the Church, without ceasing to God for him. That prayer availed much; Peter was delivered.
How clear the two great truths stand out: where there is much prayer there will be much of the Spirit; where there is much of the Spirit there will be ever-increasing prayer. So clear is the living connection between the two, that when the Spirit is given in answer to prayer it ever wakens more prayer to prepare for the fuller revelation and communication.
God still seeks for men and women who will, with all their other work of ministering, to specially give themselves to persevering prayer.
To consider how many years have passed since Murray originally penned these reflections, illustrates how timeless and vital prayer is to each and every generation. May we commit anew today to a life of prayer.
Half Way Through February
Fourteen of February's days have passed and I have not been admitted to ICU or been to the cancer center. That is pretty amazing for me! After January's bumpy start to 2011, the break has been more than welcome. I truly needed a break from all things leukemia. That probably best explains my absence from the world of blogging - my apologies to those of you who have e-mailed with concerns about my absence.
My insurance and prescription card provider (Medco) have done their best to irritate me and have caused me much grief this month. Medco has decided to reject prescription after prescription. They rejected my antifungal and I was without it for three days, so I am battling a fungal sinus infection due to their negligence. Don't you just love it when the insurance "gods" try to outguess our doctors about what medications we need?
I did go to Indianapolis last week and saw my Infectious Disease doctor. He is concerned about the fungal infection in my sinuses since they can spread to the brain (and God knows my brain is about the only body part that still functions well). He said if I don't improve soon, I will have to resume IV antifungals everyday. So, please pray for the infection to improve and for Medco not to reject my antifungal tomorrow when I go to refill it. My Infectious Disease doctor, who was consulted throughout January's quandaries, commented on what a miracle it is that I survived all that I did in January.
I probably have never sensed such a debt of gratitude in my heart to God as I have this month. Time to reflect on all that I survived and conquered, with the help of Almighty God, has been humbling and awe-inspiring. Thanks, God! (And thanks to all of you for your prayers of intercession for me.)
My insurance and prescription card provider (Medco) have done their best to irritate me and have caused me much grief this month. Medco has decided to reject prescription after prescription. They rejected my antifungal and I was without it for three days, so I am battling a fungal sinus infection due to their negligence. Don't you just love it when the insurance "gods" try to outguess our doctors about what medications we need?
I did go to Indianapolis last week and saw my Infectious Disease doctor. He is concerned about the fungal infection in my sinuses since they can spread to the brain (and God knows my brain is about the only body part that still functions well). He said if I don't improve soon, I will have to resume IV antifungals everyday. So, please pray for the infection to improve and for Medco not to reject my antifungal tomorrow when I go to refill it. My Infectious Disease doctor, who was consulted throughout January's quandaries, commented on what a miracle it is that I survived all that I did in January.
I probably have never sensed such a debt of gratitude in my heart to God as I have this month. Time to reflect on all that I survived and conquered, with the help of Almighty God, has been humbling and awe-inspiring. Thanks, God! (And thanks to all of you for your prayers of intercession for me.)
Sunday, January 30, 2011
A Quick Update: January 30, 2011
Last week drew to a close and I completely the daily IV antibiotics. Gradually, I have been able to wean off the oxygen and my breathing is improving daily. Tomorrow, I will receive my all day IVIG treatment and then February will dawn on Tuesday. And I have officially declared February as the "I will not be admitted to the hospital or require IV drugs or blood transfusion Month!"
I am always hard on myself. I expect to be up, whizzing around and full of energy. Then I paused in reflection yesterday about January. I spent fifteen of thirty-one days in ICU, at the cancer center or receiving outpatient IVs at the hospital. I received six blood transfusions. I had an ablation. I received two IVIG treatments. Two drug desensitizations were required. And a week of IV antibiotics had to be tossed into the plan. No wonder I am tired - I need to learn to be more accepting of my body and what it can still accomplish amidst staggering medical demands.
I thank you for your prayers. January is drawing to a close with my heart being filled to overflowing with gratitude. God has truly protected me, healed me, and encouraged me through it all.
Through It All
Andre' Crouch
I've had many tears and sorrows,
I've had questions for tomorrow,
There's been times I didn't know right from wrong.
but in every situation,
God gave me blessed consulation,
That my trials come to only make me strong.
Chorus:
Through it all,
Through it all,
I've learned to trust in Jesus,
I've learned to trust in God.
Through it all,
Through it all,
I've learned to depend upon His Word.
VERSE 2:
I've been to lots of places,
I've seen alot of faces,
There's been times I felt so all alone.
But in my lonely hours,
Yes, those precious lonely hours,
Jesus let's me know that I was His own
CHORUS
VERSE 3:
I thank God for the mountains,
And I thank Him for the valleys,
I thank Him for the storms He brought Me through.
For if I'd never had a problem,
I wouldn't know God could solve them,
I'd never known what Faith in God could do
To listen to this song: http://www.youtube.com/watch?v=tFzdFzzBqTc
I am always hard on myself. I expect to be up, whizzing around and full of energy. Then I paused in reflection yesterday about January. I spent fifteen of thirty-one days in ICU, at the cancer center or receiving outpatient IVs at the hospital. I received six blood transfusions. I had an ablation. I received two IVIG treatments. Two drug desensitizations were required. And a week of IV antibiotics had to be tossed into the plan. No wonder I am tired - I need to learn to be more accepting of my body and what it can still accomplish amidst staggering medical demands.
I thank you for your prayers. January is drawing to a close with my heart being filled to overflowing with gratitude. God has truly protected me, healed me, and encouraged me through it all.
Through It All
Andre' Crouch
I've had many tears and sorrows,
I've had questions for tomorrow,
There's been times I didn't know right from wrong.
but in every situation,
God gave me blessed consulation,
That my trials come to only make me strong.
Chorus:
Through it all,
Through it all,
I've learned to trust in Jesus,
I've learned to trust in God.
Through it all,
Through it all,
I've learned to depend upon His Word.
VERSE 2:
I've been to lots of places,
I've seen alot of faces,
There's been times I felt so all alone.
But in my lonely hours,
Yes, those precious lonely hours,
Jesus let's me know that I was His own
CHORUS
VERSE 3:
I thank God for the mountains,
And I thank Him for the valleys,
I thank Him for the storms He brought Me through.
For if I'd never had a problem,
I wouldn't know God could solve them,
I'd never known what Faith in God could do
To listen to this song: http://www.youtube.com/watch?v=tFzdFzzBqTc
Quotes to Ponder: January 30, 2011
"The great thing to remember is that, though our feelings come and go, His love for us does not."
-C.S. Lewis
"A crushing hurt comes to our heart and the sympathizing, scarred hand of Christ presses the wound; and just for a moment, the pain seems to intensify ..... but finally the bleeding stops."
-Beth Moore
"The essence of Christianity is not about religion at all, but about the person of Christ. Religion is a dead, man-made thing, and at the heart of Christianity is something else entirely - God, Himself, alive."
-Dietrich Bonhoeffer
"But why, if the answer to prayer is so positively promised, why are there such numberless prayers? We found that Christ taught us that the answer depended upon certain conditions. He spoke of faith, of perseverance, of praying in His Name, of praying in the will of God. But all these conditions were summed up in the one central one: 'If ye abide in Me, ask whatsoever ye will and it shall be done unto you'.
It became clear that the power to pray the effectual prayer of faith depended upon the life. It is only to a man given up to live as entirely in Christ and for Christ as the branch in the vine, that these promises come true."
-Andrew Murray
-C.S. Lewis
"A crushing hurt comes to our heart and the sympathizing, scarred hand of Christ presses the wound; and just for a moment, the pain seems to intensify ..... but finally the bleeding stops."
-Beth Moore
"The essence of Christianity is not about religion at all, but about the person of Christ. Religion is a dead, man-made thing, and at the heart of Christianity is something else entirely - God, Himself, alive."
-Dietrich Bonhoeffer
"But why, if the answer to prayer is so positively promised, why are there such numberless prayers? We found that Christ taught us that the answer depended upon certain conditions. He spoke of faith, of perseverance, of praying in His Name, of praying in the will of God. But all these conditions were summed up in the one central one: 'If ye abide in Me, ask whatsoever ye will and it shall be done unto you'.
It became clear that the power to pray the effectual prayer of faith depended upon the life. It is only to a man given up to live as entirely in Christ and for Christ as the branch in the vine, that these promises come true."
-Andrew Murray
A Prayer for Today: January 30, 2011
Precious Father,
We love you and praise You for all that You are to each of us. You are our Savior, our Healer, our Redeemer, our Deliverer, our Provider, and the Anchor of our souls.
When everything in this world shakes and is unstable, You remain that Rock of Ages. You are never changing and we are grateful that we can always count on you to be the one fixed object of our affections.
Thank You for the forgiveness that you so lovingly give. May each of us uncover a new found purpose in our lives - a God assigned purpose - may our life heartaches and heartbreaks never drown out our purposes here for You and Your Kingdom. May each of us be inspired today and allow Your light to shine through our lives, so that others will come to know You as Lord and Savior.
There is no one like You, Father. I am certain that many who will read this will be suffering today. I am even more convinced that none of these concerns will ever separate us from Your love, Lord. May disease, depression, heartache, pain, financial burdens, and every other type of challenge be addressed by You. May each of my family members, friends, and blog readers be reminded tonight of the deep, deep love and affection that You have for each of us. Love overcomes all.
In Jesus' Mighty Name I pray. AMEN.
We love you and praise You for all that You are to each of us. You are our Savior, our Healer, our Redeemer, our Deliverer, our Provider, and the Anchor of our souls.
When everything in this world shakes and is unstable, You remain that Rock of Ages. You are never changing and we are grateful that we can always count on you to be the one fixed object of our affections.
Thank You for the forgiveness that you so lovingly give. May each of us uncover a new found purpose in our lives - a God assigned purpose - may our life heartaches and heartbreaks never drown out our purposes here for You and Your Kingdom. May each of us be inspired today and allow Your light to shine through our lives, so that others will come to know You as Lord and Savior.
There is no one like You, Father. I am certain that many who will read this will be suffering today. I am even more convinced that none of these concerns will ever separate us from Your love, Lord. May disease, depression, heartache, pain, financial burdens, and every other type of challenge be addressed by You. May each of my family members, friends, and blog readers be reminded tonight of the deep, deep love and affection that You have for each of us. Love overcomes all.
In Jesus' Mighty Name I pray. AMEN.
Thursday, January 27, 2011
No Matter What
The other song that has been added to my favorites list this week is Kerrie Roberts' song No Matter What.
I’m running back to your promises one more time, Lord that’s all I can hold on to,
I gotta say this has taken me by surprise, but nothing surprises you.
Before a heartache can ever touch my life, it has to go through Your hands,
and even though I, keep asking why, I keep asking why,
No matter what, I’m gonna love You, no matter what I’m gonna need You,
I know that You can find a way to keep me from the pain but if not, if not,
I’ll trust you, no matter what, no matter what.
When I’m stuck in this nothing-ness by myself, I’m just sitting in silence,
there’s no way I can make it without Your help, I wont even try it.
I know You have Your reasons for everything,
so I will keep believing, whatever I might be feeling,
God you are my hope, and you'll be my strength,
No matter what, I’m gonna love You, no matter what I’m gonna need You,
I know that You can find a way to keep me from the pain but if not, if not,
I’ll trust you, no matter what, no matter what.
Anything I don’t have You can give it to me, but it’s ok if You don’t,
I’m not here for those things, the touch of Your love is enough on its own,
no matter what I still love You and I’m gonna need You
No matter what I’m gonna love you, no matter what I’m gonna need you,
I know that You can find a way to keep me from the pain but if not, if not, I’ll trust You,
I know that You can find a way to keep me from the pain, but if not, if not,
I’ll trust you, no matter what no matter what no matter no matter what
To listen: http://www.youtube.com/watch?v=OA3MSqufJP4
I’m running back to your promises one more time, Lord that’s all I can hold on to,
I gotta say this has taken me by surprise, but nothing surprises you.
Before a heartache can ever touch my life, it has to go through Your hands,
and even though I, keep asking why, I keep asking why,
No matter what, I’m gonna love You, no matter what I’m gonna need You,
I know that You can find a way to keep me from the pain but if not, if not,
I’ll trust you, no matter what, no matter what.
When I’m stuck in this nothing-ness by myself, I’m just sitting in silence,
there’s no way I can make it without Your help, I wont even try it.
I know You have Your reasons for everything,
so I will keep believing, whatever I might be feeling,
God you are my hope, and you'll be my strength,
No matter what, I’m gonna love You, no matter what I’m gonna need You,
I know that You can find a way to keep me from the pain but if not, if not,
I’ll trust you, no matter what, no matter what.
Anything I don’t have You can give it to me, but it’s ok if You don’t,
I’m not here for those things, the touch of Your love is enough on its own,
no matter what I still love You and I’m gonna need You
No matter what I’m gonna love you, no matter what I’m gonna need you,
I know that You can find a way to keep me from the pain but if not, if not, I’ll trust You,
I know that You can find a way to keep me from the pain, but if not, if not,
I’ll trust you, no matter what no matter what no matter no matter what
To listen: http://www.youtube.com/watch?v=OA3MSqufJP4
You're Not Alone
Earlier this week, around 4 AM, as I waited in ICU for morning to dawn, this Meredith Andrews song played from my favorite Christian music station. So many times, God speaks to my spirit through music. These words washed over my soul and encouraged my heart. I pray they will encourage you tonight - remember, you are never alone. And I was not alone in that ICU room.
You're Not Alone
Meredith Andrews
I search for love
When the night came and it closed in
I was alone
but you found me where I was hiding
and now I'll never ever be the same
It was the sweetest voice that called my name
saying
You're not alone
for I am here
let me wipe away your every fear
My love, I've never left your side
I have seen you through the darkest night
and I'm the one who's loved you all your life
All of your life
You cry yourself to sleep
cause the hurt is real
and the pain cuts deep
All hope seems lost
With heartache your closest friend
and everyone else long gone
You've had to face the music on your own
but there is a sweeter song that calls you home
saying
You're not alone
for I am here
let me wipe away your every tear
My love I've never left your side
I have seen you through the darkest nights
And I'm the one who's loved you all your life
All your life
Faithful and true... Forever
For my love will carry you....
You're not alone
for I... I am here
let me wipe away every fear... Oh yeah
My love I've never left your side
I have seen you through your darkest night
Your darkest night
And I'm the one who's loved you all your life
All of your life
www.youtube.com/watch?v=sNW1hrZ4V8Y
You're Not Alone
Meredith Andrews
I search for love
When the night came and it closed in
I was alone
but you found me where I was hiding
and now I'll never ever be the same
It was the sweetest voice that called my name
saying
You're not alone
for I am here
let me wipe away your every fear
My love, I've never left your side
I have seen you through the darkest night
and I'm the one who's loved you all your life
All of your life
You cry yourself to sleep
cause the hurt is real
and the pain cuts deep
All hope seems lost
With heartache your closest friend
and everyone else long gone
You've had to face the music on your own
but there is a sweeter song that calls you home
saying
You're not alone
for I am here
let me wipe away your every tear
My love I've never left your side
I have seen you through the darkest nights
And I'm the one who's loved you all your life
All your life
Faithful and true... Forever
For my love will carry you....
You're not alone
for I... I am here
let me wipe away every fear... Oh yeah
My love I've never left your side
I have seen you through your darkest night
Your darkest night
And I'm the one who's loved you all your life
All of your life
www.youtube.com/watch?v=sNW1hrZ4V8Y
It's the Best Day Ever!
One of our grandson's favorite new songs to sing in his two year old singing voice is, "It's The Best Day Ever!" So I echo those lyrics today. Today (and everyday) is the BEST day ever. No matter what life brings our direction, life is so precious and priceless, we need to be reminded to celebrate each moment we have air in our lungs.
This is a post about praises to the Most High God - my Everything. I praise Him for what He has carried me through the past 48 hours. Forty-eight hours ago, I was at the cancer center, receiving my IV antibiotic. The nurse alerted me that my hemoglobin was down two points from Monday. My family doctor told me to go straight to the gynecologist office since the blood loss has continued to be severe. So my husband picked me up and took me to her office. The news was grim. She told me that if we did not intervene, despite the risks of infection and reactions for me, that this blood loss was going to result in my going into shock and possibly dying from it. She told me to go home and pack my bags and medicines and report to ICU. An uterine ablation was scheduled for the early morning hours and I was type and cross matched for the search for more blood for transfusions to be located.
One would think that a night alone before surgery in the dark and quiet of an ICU room, would arouse fear and trepidation in one's heart. I only slept for an hour but spent the rest of the night praying, listening to my praise and worship music and reading God's Word. I sought His perfect peace and courage to face the next day. Since I have so many drug reactions, the concerns were about how to sedate me and how to prevent infection risks. I asked God for the courage and peace to not to be put to sleep and to just ask for a local Lidocaine injection.
They rechecked my hemoglobin after midnight and alarmingly, it had dropped even further and was approaching the dangerous 5 (normal range 12-16) level. Discussion was made by the physicians involved and they elected to perform the procedure and then follow it with two transfusions of packed red blood cells. (Again, I thank all of you blood donors!)
A bit before 8 AM yesterday my beloved family physician arrived at the hospital and told me that she was going to surgery with me. Talk about an answer to prayer - she alone knows all of my reactions, what to do with the reactions, and everything about my body. This dear, precious doctor went to the operating room with me and left her practice. She sat right beside my head, holding my hand and gently telling me what was happening, each step of the way. The perfect peace of God was so intense in that operating room that I just put my MP3 ear buds in my ears with my worship music in the ear the doctor was not using to communicate, prayed and I made it without being sedated! When I was finished, the anesthesiologist said, "If I just had that done to me I would've died without anesthesia!" Then he said I could even bypass the recovery room since I had not been sedated and return to my ICU room! What the Great Physician can do with us when He is the Chief of our Medical Teams.
In addition to the other very particular requirements that my blood must meet, this time the irradiated, CMV negative, leukodepleted blood was also washed. My very wise retired NIH oncologist, Dr. M., told me after the four transfusions earlier this month, to have my doctor have the blood washed. I struggle so hard with reactions to blood products. Washing the cells this time made such a difference - no reactions and I tolerated faster rates so the entire units could be infused without any wasting. (It is challenging to envision the person who had to wash each one of those little red blood cells, isn't it?) :-)
The plan on Tuesday was for me to stay until Friday in ICU and then return home for the weekend and receive IVIG on Monday. God had His plan ....they wheeled me out of ICU at 10 PM last night and I slept like a baby at home. Isn't that astounding? I'm very weak still and I am typing this from the cancer center since I had to return for my IV antibiotics today (and tomorrow).
Today, on my drive here, both my family physician and the gynecologist contacted me within an hour of each other, to tell me the uterine biopsy is BENIGN!!! YAY GOD! Such a relief.....
And more good news - my hemoglobin is 10 today! Just two more points and I am "normal". (Those near to me might debate if I am ever "normal"!)
Your prayers for me were apparent. Once again I am humbled and I stand in amazement at what He has pulled me through this time. Despite what unreal, challenging weeks these have been, God has shown Himself mighty over and over again. To God be the glory . To you I send my gratitude and love.
Soon it will be February and Stacie is going to be healthier and stronger and not be admitted to ICU or have to go for outpatient IV's on any day in February! AMEN?
This is a post about praises to the Most High God - my Everything. I praise Him for what He has carried me through the past 48 hours. Forty-eight hours ago, I was at the cancer center, receiving my IV antibiotic. The nurse alerted me that my hemoglobin was down two points from Monday. My family doctor told me to go straight to the gynecologist office since the blood loss has continued to be severe. So my husband picked me up and took me to her office. The news was grim. She told me that if we did not intervene, despite the risks of infection and reactions for me, that this blood loss was going to result in my going into shock and possibly dying from it. She told me to go home and pack my bags and medicines and report to ICU. An uterine ablation was scheduled for the early morning hours and I was type and cross matched for the search for more blood for transfusions to be located.
One would think that a night alone before surgery in the dark and quiet of an ICU room, would arouse fear and trepidation in one's heart. I only slept for an hour but spent the rest of the night praying, listening to my praise and worship music and reading God's Word. I sought His perfect peace and courage to face the next day. Since I have so many drug reactions, the concerns were about how to sedate me and how to prevent infection risks. I asked God for the courage and peace to not to be put to sleep and to just ask for a local Lidocaine injection.
They rechecked my hemoglobin after midnight and alarmingly, it had dropped even further and was approaching the dangerous 5 (normal range 12-16) level. Discussion was made by the physicians involved and they elected to perform the procedure and then follow it with two transfusions of packed red blood cells. (Again, I thank all of you blood donors!)
A bit before 8 AM yesterday my beloved family physician arrived at the hospital and told me that she was going to surgery with me. Talk about an answer to prayer - she alone knows all of my reactions, what to do with the reactions, and everything about my body. This dear, precious doctor went to the operating room with me and left her practice. She sat right beside my head, holding my hand and gently telling me what was happening, each step of the way. The perfect peace of God was so intense in that operating room that I just put my MP3 ear buds in my ears with my worship music in the ear the doctor was not using to communicate, prayed and I made it without being sedated! When I was finished, the anesthesiologist said, "If I just had that done to me I would've died without anesthesia!" Then he said I could even bypass the recovery room since I had not been sedated and return to my ICU room! What the Great Physician can do with us when He is the Chief of our Medical Teams.
In addition to the other very particular requirements that my blood must meet, this time the irradiated, CMV negative, leukodepleted blood was also washed. My very wise retired NIH oncologist, Dr. M., told me after the four transfusions earlier this month, to have my doctor have the blood washed. I struggle so hard with reactions to blood products. Washing the cells this time made such a difference - no reactions and I tolerated faster rates so the entire units could be infused without any wasting. (It is challenging to envision the person who had to wash each one of those little red blood cells, isn't it?) :-)
The plan on Tuesday was for me to stay until Friday in ICU and then return home for the weekend and receive IVIG on Monday. God had His plan ....they wheeled me out of ICU at 10 PM last night and I slept like a baby at home. Isn't that astounding? I'm very weak still and I am typing this from the cancer center since I had to return for my IV antibiotics today (and tomorrow).
Today, on my drive here, both my family physician and the gynecologist contacted me within an hour of each other, to tell me the uterine biopsy is BENIGN!!! YAY GOD! Such a relief.....
And more good news - my hemoglobin is 10 today! Just two more points and I am "normal". (Those near to me might debate if I am ever "normal"!)
Your prayers for me were apparent. Once again I am humbled and I stand in amazement at what He has pulled me through this time. Despite what unreal, challenging weeks these have been, God has shown Himself mighty over and over again. To God be the glory . To you I send my gratitude and love.
Soon it will be February and Stacie is going to be healthier and stronger and not be admitted to ICU or have to go for outpatient IV's on any day in February! AMEN?
Tuesday, January 25, 2011
Breathing
Praise God, the fourth antibiotic FINALLY appears to be making small improvements. I inhaled and exhaled a normal breath overnight. I never thought breathing could feel foreign to me but it did last night. We take breathing for granted until we cannot inhale and exhale. What a glorious feeling to breathe. Way to go God!
My cough has lessened and the oxygen levels have improved. I am still experiencing shortness of breath but I think it is probably more related to the low hemoglobin now instead of the pulmonary infections.
The blood loss needs to stop now in Jesus Name or the doctor said I will have to be admitted for more transfusions. Please agree in prayer with me that can avoid that. They will check a daily blood count in an effort to catch the hemoglobin before it drops as dangerously low as a couple of weeks ago.
This month's need for blood made me once again reflect on the selfless people who donate blood. If you are a blood donor, we thank you from the bottom of our hearts. Each month I require the blood product (immunoglobulin) donations of over 3000 people. Then when critical times emerge for cancer patients, red blood cells and platelets become life-saving resources. If you are a donor, thank you. If you are considering blood donation, I encourage you today to give the true gift of life.
I will go for IV Tobramycin this afternoon at the cancer center. Our oldest daughter is helping me today so Lil Man will be here soon with her. He is the best medicine!
My cough has lessened and the oxygen levels have improved. I am still experiencing shortness of breath but I think it is probably more related to the low hemoglobin now instead of the pulmonary infections.
The blood loss needs to stop now in Jesus Name or the doctor said I will have to be admitted for more transfusions. Please agree in prayer with me that can avoid that. They will check a daily blood count in an effort to catch the hemoglobin before it drops as dangerously low as a couple of weeks ago.
This month's need for blood made me once again reflect on the selfless people who donate blood. If you are a blood donor, we thank you from the bottom of our hearts. Each month I require the blood product (immunoglobulin) donations of over 3000 people. Then when critical times emerge for cancer patients, red blood cells and platelets become life-saving resources. If you are a donor, thank you. If you are considering blood donation, I encourage you today to give the true gift of life.
I will go for IV Tobramycin this afternoon at the cancer center. Our oldest daughter is helping me today so Lil Man will be here soon with her. He is the best medicine!
Monday, January 24, 2011
Please Pray ...... And Then Shout a Praise!
Have I ever been slothful about updating the blog! Right now, trying to remain alive and tend to all things medical is consuming almost every thought and day. As with the last update, my mind is swarming and I cannot even determine where to begin. So I will begin with this - I am still trusting God. I still have faith that He will sustain me and muliply my days. Do I wish God would reach down tonight, touch my body, heal me quickly and relieve my pain and suffering? You bet I do. Yet, I know as terribly challenging as my life is right now, that He is holding my arms up, cheering me on, saying, "You can do this, Stacie. Don't give up. Keep fighting. I am right beside you."
Since November, these two or three months have rated at the top of my challenging scale. I have remained acutely aware of one fact - I am gracious beyond words when I am so ill and I cannot request prayer - to know that so many of you are daily interceding for me in prayer to our Father. I know if I disappear from blog-a-sphere, many of you are checking in and the Holy Spirit is prompting you that I am in need. It comforts me when I am too ill to write and my brain is too oxygen deprived to think, to know that my empty written words are not even needed for the Holy Spirit to rally my prayer warriors on my behalf. God does so much better when we just step out of the way, doesn't He?
After my last update, more test results returned pointing to worsening of my already compromised immune system. I knew this was a possible risk when I began the radiation. Yet, it was one of those gut wrenching decisions I had to make. If I didn't treat the leukemia, it would threaten my life. If I did treat the leukemia, my immune system would take a beating. The consensus is that my immune deficiency is now "profound" and my radiation was officially suspended. A portion of my spirit was so disappointing for all of us knew that radiation was my "last chance" at knocking back the leukemia. (But don't dispair - God can use radiation even when it is not being actively administered to my body - I am saving the good report for the last paragraph - kind of like a cliff hanger in a good novel!)
On Friday, Mom and Dad took me to the hospital for tests. I worsened overnight on Thursday - higher fevers, declining oxygen levels, and the coughing/shortness of breath grew worse. My doctor suspected a blood clot in my lung because of my history of PE (pulmonary embolus) and due to the fact that I have been taking estrogen for the blood loss (clots are a risk of estrogen). Thankfully, the test was negative for the blood clot but the waiting for results was a bit tedious.
With no blood clot to blame for the worsening of symptoms the typical "work up" was started - blood cultures, sputum cultures, PCP silver staind, CMV antigen, fungal stains and cultures. Many of these tests take time to produce answers and we do not have the luxury of time right now. My doctor told me that if I continued to decline, she said she would have no choice but to put me back in ICU and began broad spectrum antibiotics, antivirals and antifungals while we wait on the test results. The concern remains rightfully intent and concerning that the CD4 count being so dangerously low at 62 (below 200 is considered extremely dangerous) that PCP is lurking and evading our attempts to identify it. I have been told that with my condition and that CD4 count, if PCP is detected, I could have a 50/50 chance of surviving it. But despite these dire verbal warnings, I believeonly God holds the number of days planned for my life.
Later Friday, the doctor increased steroid doses and added at-home nebulizer (breathing) treatments for me along with oxygen.Temperatures, low oxygen levels and wheezing continued and by Saturday morning, the decision was made to send me to the hospital for desensitization to IV Tobramycin. The doctor also reordered all of the cultures and stains we had done on Friday to be repeated. Research revealed that a simple blood test known as LDH is sometimes used to help diagnose PCP. If LDH is elevated it "can" be an indicator of PCP. Nothing definitive, but as medical detectives, we search for whatever clues we can find. My LDH level was negative, so that "clue" gave us a bit of relief. A bronchoscopy is our one remaining, truly accurate way to identify what is going on in my lungs. I detest the bronchoscopy (scope downt throat into lungs), but it remains a looming option.
When immune compromised patients have pulmonary symptoms present, we cannot assess our condition by fevers. It takes an immune system that is intact to mount fevers and I can be very ill and not present with a fever. Instead, monitoring the oxygen saturation levels is a more reliable method to assess worsening of infection. The doctor had my oxygen levels monitored all day Saturday at the hospital and since I have oxygen at home, she decided I was safer to go home and sleep in my own, less germy bed and return to the hospital on Sunday morning. I found a delicious cinnamon tea and I begin brewing that left and right. The steam and heat from it are soothing to my lungs and feels as though it opens up the airways some when I inhale it. We returned to the hospital again on Sunday morning to receive more IV medicaitons.
Overnight last night, the respiratory problems continued. I have never had a pulmonary infection that "felt" like this one or that has been so long-running as this infection. It has been my nemesis for two weeks. I began chilling around 1 AM - we know that when I have chills and rigors, it is time to go to the hospital since it can indicate sepsis or other serious complications for me. I piled on blankets and prayed - I didn't want to have to awaken Kevin or my doctor at that hour of the night and sometime while praying, the chills must have stopped and I dozed off.
I e-mailed my doctor around 6 AM and by 8 AM, she called me and had already consulted with my Infectious Disease doctor. There are not many doctors like dear Dr. S. She worked laborously all weekend, arranging IVs, desensitizations, medications, and my care. God certainly blessed me with many wonderful medical professionals who tread this journey with me.
PCP (p. carinii pneumocystic pneumonia) remains one of the biggest threats to my life with the even deeper immune suppression that the radiation has inflicted. Today, the Infectious Disease doctor said that he believes that I have another staph infection in my lungs (what I had in June when I was in ICU for a weeek). So I returned to the cancer center today and they desensitized me to Cleocin (antibiotic) and then proceeded with the planned IV Tobramycin (antibiotic). He warned us that I am in a position to develop a c.diff infection - a serious complication of the colon when too many powerful antibiotics are being used. I have battled c.diff before and I would prefer not to repeat that experience. My doctor put me on powerful probiotics that I will take every time that I take the Cleocin.
The Infectious Disease doctor also surprised us by telling my doctor that there is alot of H1N1 (swine flu) in Indiana this year. We were shocked with that information - I thought H1N1 had been buried last year. Afterall, the 24 hour news stations are not touting H1N1 like every story reported on this time last year. To err on the side of caution, he ordered a swab to look for any signs of influenza in me although I am not symptomatic of that and he said it was a very unlikely cause of the breathing problems. He said it would be too bad if we overlooked something like that as the source of the pulmonary problems. There should be an answer on that tomorrow.
Unfortunately, the blood loss continues. My hemoglobin rallied to 12.0 (finally to the normal range) on Monday and has been on a fast descending trajectory this week and is 9.0 today. Everyone keeps asking me what are the doctors going to do about the blood loss. Good question. There are options here - all with significant risk for me - however, we cannot even begin to consider those options and difficult decisions until I can breathe better and correct the pulmonary concerns. If the blood loss doesn't cease soon, there will be no alternative but to transfuse me again. Please pray specifically for God to control this "issue of blood". We read of Him healing the lady with the "issue of blood" in Mark 5 and he told her after she was healed, "Daughter, your faith has made you well." Lord, let my faith and trust in You not waiver in the midst of all of this suffering and turmoil.
After this long-winded January in review, I want to close with a praise. All of these complications - respiratory, bleeding, infections, in and out of hospitals - have attempted to blot out a very good report. And I believe it is appropriate to close this post with that news. Somehow, someway (God's Way) as we have been utterly consumed with this chaos known as our lives right now, God has been working and using the radiation to whomp the leukemia. My radiation oncologist had told us that he anticipated for the radiation to continue working for a couple of months after the last treatment (in December).
God has been at work - even without my traveling for radiation - we have watched my spleen shrink more; we cannot locate any enlarged lymph nodes in my body; and on Monday, I had an amazing blood report. The cancerous lymphocytes always would run around 98-99% of the total white count (normally should be around 40%). And my lymphocyte percentage was down in that 40-50% range. That is significant. I will be eager to closely review my response once all of these other complications have been resolved to discertain what degree of remission of the leukemia has been achieved.
My family doctor told me the other day, "Stacie, when are we going to celebrate that degree of remission that you have achieved?" And it dawned on both of us that we have been so engaged trying to keep me alive from all of these other dangers, that the radiation just continued to work behind the scenes on the leukemia. The one lymph node on the left side of my neck has never disappeared in 14 years with 5 different chemotherapy protocols. And I cannot find that little (big) rascal!
Praise God with me about this good news that is trying to be recognized among all of the negative reports. I am praying that God will deliver me once again from these current serious threats to my life and I will be able to be assessed and learned that the leukemia has been given the biggest black eye that we could deliver to the enemy of my health.
I told you it would be a cliff hanger closing! Thank you for your continued prayers and words of encouragement.
Since November, these two or three months have rated at the top of my challenging scale. I have remained acutely aware of one fact - I am gracious beyond words when I am so ill and I cannot request prayer - to know that so many of you are daily interceding for me in prayer to our Father. I know if I disappear from blog-a-sphere, many of you are checking in and the Holy Spirit is prompting you that I am in need. It comforts me when I am too ill to write and my brain is too oxygen deprived to think, to know that my empty written words are not even needed for the Holy Spirit to rally my prayer warriors on my behalf. God does so much better when we just step out of the way, doesn't He?
After my last update, more test results returned pointing to worsening of my already compromised immune system. I knew this was a possible risk when I began the radiation. Yet, it was one of those gut wrenching decisions I had to make. If I didn't treat the leukemia, it would threaten my life. If I did treat the leukemia, my immune system would take a beating. The consensus is that my immune deficiency is now "profound" and my radiation was officially suspended. A portion of my spirit was so disappointing for all of us knew that radiation was my "last chance" at knocking back the leukemia. (But don't dispair - God can use radiation even when it is not being actively administered to my body - I am saving the good report for the last paragraph - kind of like a cliff hanger in a good novel!)
On Friday, Mom and Dad took me to the hospital for tests. I worsened overnight on Thursday - higher fevers, declining oxygen levels, and the coughing/shortness of breath grew worse. My doctor suspected a blood clot in my lung because of my history of PE (pulmonary embolus) and due to the fact that I have been taking estrogen for the blood loss (clots are a risk of estrogen). Thankfully, the test was negative for the blood clot but the waiting for results was a bit tedious.
With no blood clot to blame for the worsening of symptoms the typical "work up" was started - blood cultures, sputum cultures, PCP silver staind, CMV antigen, fungal stains and cultures. Many of these tests take time to produce answers and we do not have the luxury of time right now. My doctor told me that if I continued to decline, she said she would have no choice but to put me back in ICU and began broad spectrum antibiotics, antivirals and antifungals while we wait on the test results. The concern remains rightfully intent and concerning that the CD4 count being so dangerously low at 62 (below 200 is considered extremely dangerous) that PCP is lurking and evading our attempts to identify it. I have been told that with my condition and that CD4 count, if PCP is detected, I could have a 50/50 chance of surviving it. But despite these dire verbal warnings, I believeonly God holds the number of days planned for my life.
Later Friday, the doctor increased steroid doses and added at-home nebulizer (breathing) treatments for me along with oxygen.Temperatures, low oxygen levels and wheezing continued and by Saturday morning, the decision was made to send me to the hospital for desensitization to IV Tobramycin. The doctor also reordered all of the cultures and stains we had done on Friday to be repeated. Research revealed that a simple blood test known as LDH is sometimes used to help diagnose PCP. If LDH is elevated it "can" be an indicator of PCP. Nothing definitive, but as medical detectives, we search for whatever clues we can find. My LDH level was negative, so that "clue" gave us a bit of relief. A bronchoscopy is our one remaining, truly accurate way to identify what is going on in my lungs. I detest the bronchoscopy (scope downt throat into lungs), but it remains a looming option.
When immune compromised patients have pulmonary symptoms present, we cannot assess our condition by fevers. It takes an immune system that is intact to mount fevers and I can be very ill and not present with a fever. Instead, monitoring the oxygen saturation levels is a more reliable method to assess worsening of infection. The doctor had my oxygen levels monitored all day Saturday at the hospital and since I have oxygen at home, she decided I was safer to go home and sleep in my own, less germy bed and return to the hospital on Sunday morning. I found a delicious cinnamon tea and I begin brewing that left and right. The steam and heat from it are soothing to my lungs and feels as though it opens up the airways some when I inhale it. We returned to the hospital again on Sunday morning to receive more IV medicaitons.
Overnight last night, the respiratory problems continued. I have never had a pulmonary infection that "felt" like this one or that has been so long-running as this infection. It has been my nemesis for two weeks. I began chilling around 1 AM - we know that when I have chills and rigors, it is time to go to the hospital since it can indicate sepsis or other serious complications for me. I piled on blankets and prayed - I didn't want to have to awaken Kevin or my doctor at that hour of the night and sometime while praying, the chills must have stopped and I dozed off.
I e-mailed my doctor around 6 AM and by 8 AM, she called me and had already consulted with my Infectious Disease doctor. There are not many doctors like dear Dr. S. She worked laborously all weekend, arranging IVs, desensitizations, medications, and my care. God certainly blessed me with many wonderful medical professionals who tread this journey with me.
PCP (p. carinii pneumocystic pneumonia) remains one of the biggest threats to my life with the even deeper immune suppression that the radiation has inflicted. Today, the Infectious Disease doctor said that he believes that I have another staph infection in my lungs (what I had in June when I was in ICU for a weeek). So I returned to the cancer center today and they desensitized me to Cleocin (antibiotic) and then proceeded with the planned IV Tobramycin (antibiotic). He warned us that I am in a position to develop a c.diff infection - a serious complication of the colon when too many powerful antibiotics are being used. I have battled c.diff before and I would prefer not to repeat that experience. My doctor put me on powerful probiotics that I will take every time that I take the Cleocin.
The Infectious Disease doctor also surprised us by telling my doctor that there is alot of H1N1 (swine flu) in Indiana this year. We were shocked with that information - I thought H1N1 had been buried last year. Afterall, the 24 hour news stations are not touting H1N1 like every story reported on this time last year. To err on the side of caution, he ordered a swab to look for any signs of influenza in me although I am not symptomatic of that and he said it was a very unlikely cause of the breathing problems. He said it would be too bad if we overlooked something like that as the source of the pulmonary problems. There should be an answer on that tomorrow.
Unfortunately, the blood loss continues. My hemoglobin rallied to 12.0 (finally to the normal range) on Monday and has been on a fast descending trajectory this week and is 9.0 today. Everyone keeps asking me what are the doctors going to do about the blood loss. Good question. There are options here - all with significant risk for me - however, we cannot even begin to consider those options and difficult decisions until I can breathe better and correct the pulmonary concerns. If the blood loss doesn't cease soon, there will be no alternative but to transfuse me again. Please pray specifically for God to control this "issue of blood". We read of Him healing the lady with the "issue of blood" in Mark 5 and he told her after she was healed, "Daughter, your faith has made you well." Lord, let my faith and trust in You not waiver in the midst of all of this suffering and turmoil.
After this long-winded January in review, I want to close with a praise. All of these complications - respiratory, bleeding, infections, in and out of hospitals - have attempted to blot out a very good report. And I believe it is appropriate to close this post with that news. Somehow, someway (God's Way) as we have been utterly consumed with this chaos known as our lives right now, God has been working and using the radiation to whomp the leukemia. My radiation oncologist had told us that he anticipated for the radiation to continue working for a couple of months after the last treatment (in December).
God has been at work - even without my traveling for radiation - we have watched my spleen shrink more; we cannot locate any enlarged lymph nodes in my body; and on Monday, I had an amazing blood report. The cancerous lymphocytes always would run around 98-99% of the total white count (normally should be around 40%). And my lymphocyte percentage was down in that 40-50% range. That is significant. I will be eager to closely review my response once all of these other complications have been resolved to discertain what degree of remission of the leukemia has been achieved.
My family doctor told me the other day, "Stacie, when are we going to celebrate that degree of remission that you have achieved?" And it dawned on both of us that we have been so engaged trying to keep me alive from all of these other dangers, that the radiation just continued to work behind the scenes on the leukemia. The one lymph node on the left side of my neck has never disappeared in 14 years with 5 different chemotherapy protocols. And I cannot find that little (big) rascal!
Praise God with me about this good news that is trying to be recognized among all of the negative reports. I am praying that God will deliver me once again from these current serious threats to my life and I will be able to be assessed and learned that the leukemia has been given the biggest black eye that we could deliver to the enemy of my health.
I told you it would be a cliff hanger closing! Thank you for your continued prayers and words of encouragement.
Sunday, January 9, 2011
Lag in Blog Updates: Please Pray
My apologies for the long delay with my updates. It has been a brutal start to 2011. I don’t even know if I can recall everything I need to share. I thank Tina for sending out a brief request for prayer this week when I was admitted to ICU.
On December 30th, I had a planning CT for my radiation – supposedly just of the abdomen but I suddenly learned on Monday, January 3rd that a pelvic CT had been done and numerous concerns were discovered. A large mass and a smaller one were discovered in my uterus. And two cysts were on my ovaries. The CT report and my oncologist told me I needed immediate gynecologic review to rule out additional cancers. I had been struggling with abnormal bleeding and it had worsened before the end of the year.
My blood counts were marginal on Monday, but the radiation oncologist proceeded with radiation. I also received my IVIG treatment on Monday.
On Tuesday, I saw my family doctor who examined me and was very concerned. Fortunately, the cardiac concerns seem to be checking out as a repeat EKG was “perfect”. Thank, God, for that good news. My hemoglobin was treading downward and weakness was increasing.
On Wednesday, I went for two pelvic ultrasounds. Good news emerged with those – the large mass was a mass of blood clots and the ovarian cysts appeared benign. Later that day, an ovarian cancer marker test returned as negative. Great news and praise for those concerns not to be cancerous but the amount of blood loss was escalating and I knew I was getting in danger.
My theory for these problems is that the radiation has damaged my left ovary (since it is within the radiation field). The ovaries produce estrogen and estrogen helps to regulate cycles. Also, some estrogen is produced in the kidneys and they have been irradiating my left kidney also, which lies behind my spleen. Thus, the massive blood loss has the potential to be radiation related. If this theory is proven true, the continuation of my radiation treatments will hang in the balance.
By Thursday, I was much worse. Our oldest daughter came to stay with me during the day and by afternoon; I was using oxygen and could barely walk from chair to chair. She took me to the doctor late in the day and as soon as the nurse saw me, she ran for the doctor. My pulse was 140, my lips and nail beds were colorless and she said that I had no choice but to be admitted to ICU. When we arrive at the hospital, my hemoglobin was down to 6.3 and since active blood loss was occurring, the doctor said the realistic hemoglobin value was in the range of 5. During 14 years of leukemia and chemotherapy (which always affects hemoglobin levels), I had never reached that dangerous level.
Obtaining units of blood for me is a challenge. Since I receive the IVIG blood-based infusions every month, typing blood for transfusions becomes more complicated. Also, all blood that I receive must be irradiated, leuko-depleted, washed and CMV negative. The blood could not be located locally and was finally located in Indianapolis and a driver brought it to us. The first of four transfusions began late Thursday night. As predicted, the hemoglobin level was in the 5 range because even after the first transfusion, the hemoglobin level did not budge from the 6.3 reading from Thursday afternoon. I began running fevers so antibiotic were added to protect me.
On Friday, I received two additional blood transfusions. I have had past serious blood transfusion reactions, but thankfully, the first three transfusions were flawless. We used plenty of premedications and very slow infusion rates. The blood loss continued to be so significant that we could not keep up with it even with transfusions. Another consultation was made and the medical team decided despite the risks of dangerous blood clots from IV estrogen, that we had no other choice. Normally, six IV doses are given for these situations but the doctors decided to try only two since I have had a blood clot in my lung before (PE). Almost instantly after the second IV, the blood loss stopped. I was so relieved but by Saturday, the blood loss resumed, hemoglobin levels remained low and I remained in ICU and on oxygen. A fourth blood transfusion was ordered and more blood was located in Indianapolis for me. Unfortunately, we decided to increase the infusion rate and it resulted in a reaction to the transfusion. I was so sick yesterday. Low dose estrogen was started, in an attempt to stop the blood loss without as great of chance of blood clots that could cause a stroke, pulmonary embolus, or heart attack.
My hemoglobin finally made it to the 8 range yesterday evening and the doctor decided to discharge me since the germy ICU environment is a risk to me. I left last night, so sick and still having so many problems to resolve. I will not able to receive radiation this week (and perhaps I will never receive anymore). I know of at least two procedures/biopsies pending for this week. If my hemoglobin continues to decline, more transfusions will be in my history.
My NIH oncologist also reminded us today that with four blood transfusions, my own clotting factors could have been altered. So some testing for this will happen this week.
And all of these new problems rest solidly on top of the mountain of other health challenges related to leukemia and infections. Please pray for my family, me and my medical team. Please pray that I will not develop blood clots from the estrogen (IV and oral). Please pray that the search for additional malignancies will continue to reveal nothing cancerous. Please pray for the blood loss to cease and the need for transfusions will conclude. Please pray for strength and grace to stand up under the enormous strain of so many things going wrong in my body.
I am reminded of this Scripture from Romans 4:
19 And not being weak in faith, he (Abraham) did not consider his own body, already dead (since he was about a hundred years old), and the deadness of Sarah’s womb. 20 He did not waver at the promise of God through unbelief, but was strengthened in faith, giving glory to God, 21 and being fully convinced that what He had promised He was also able to perform. 22 And therefore “it was accounted to him for righteousness.”
Abraham and Sarah longed for a son – but they were so very old. They did not look at their situation or consider the condition of their bodies. They didn’t waver at the promise of God. They were not doubtful or unbelieving. They grew in Faith and praised God. And that promised son was the answer to their prayers.
May I be able to replicate their faith-filled actions and witness this broken, failing body, restored and perfectly functioning. Please join me with prayers that are filled with praise, belief, and void of doubt and disbelief.
On December 30th, I had a planning CT for my radiation – supposedly just of the abdomen but I suddenly learned on Monday, January 3rd that a pelvic CT had been done and numerous concerns were discovered. A large mass and a smaller one were discovered in my uterus. And two cysts were on my ovaries. The CT report and my oncologist told me I needed immediate gynecologic review to rule out additional cancers. I had been struggling with abnormal bleeding and it had worsened before the end of the year.
My blood counts were marginal on Monday, but the radiation oncologist proceeded with radiation. I also received my IVIG treatment on Monday.
On Tuesday, I saw my family doctor who examined me and was very concerned. Fortunately, the cardiac concerns seem to be checking out as a repeat EKG was “perfect”. Thank, God, for that good news. My hemoglobin was treading downward and weakness was increasing.
On Wednesday, I went for two pelvic ultrasounds. Good news emerged with those – the large mass was a mass of blood clots and the ovarian cysts appeared benign. Later that day, an ovarian cancer marker test returned as negative. Great news and praise for those concerns not to be cancerous but the amount of blood loss was escalating and I knew I was getting in danger.
My theory for these problems is that the radiation has damaged my left ovary (since it is within the radiation field). The ovaries produce estrogen and estrogen helps to regulate cycles. Also, some estrogen is produced in the kidneys and they have been irradiating my left kidney also, which lies behind my spleen. Thus, the massive blood loss has the potential to be radiation related. If this theory is proven true, the continuation of my radiation treatments will hang in the balance.
By Thursday, I was much worse. Our oldest daughter came to stay with me during the day and by afternoon; I was using oxygen and could barely walk from chair to chair. She took me to the doctor late in the day and as soon as the nurse saw me, she ran for the doctor. My pulse was 140, my lips and nail beds were colorless and she said that I had no choice but to be admitted to ICU. When we arrive at the hospital, my hemoglobin was down to 6.3 and since active blood loss was occurring, the doctor said the realistic hemoglobin value was in the range of 5. During 14 years of leukemia and chemotherapy (which always affects hemoglobin levels), I had never reached that dangerous level.
Obtaining units of blood for me is a challenge. Since I receive the IVIG blood-based infusions every month, typing blood for transfusions becomes more complicated. Also, all blood that I receive must be irradiated, leuko-depleted, washed and CMV negative. The blood could not be located locally and was finally located in Indianapolis and a driver brought it to us. The first of four transfusions began late Thursday night. As predicted, the hemoglobin level was in the 5 range because even after the first transfusion, the hemoglobin level did not budge from the 6.3 reading from Thursday afternoon. I began running fevers so antibiotic were added to protect me.
On Friday, I received two additional blood transfusions. I have had past serious blood transfusion reactions, but thankfully, the first three transfusions were flawless. We used plenty of premedications and very slow infusion rates. The blood loss continued to be so significant that we could not keep up with it even with transfusions. Another consultation was made and the medical team decided despite the risks of dangerous blood clots from IV estrogen, that we had no other choice. Normally, six IV doses are given for these situations but the doctors decided to try only two since I have had a blood clot in my lung before (PE). Almost instantly after the second IV, the blood loss stopped. I was so relieved but by Saturday, the blood loss resumed, hemoglobin levels remained low and I remained in ICU and on oxygen. A fourth blood transfusion was ordered and more blood was located in Indianapolis for me. Unfortunately, we decided to increase the infusion rate and it resulted in a reaction to the transfusion. I was so sick yesterday. Low dose estrogen was started, in an attempt to stop the blood loss without as great of chance of blood clots that could cause a stroke, pulmonary embolus, or heart attack.
My hemoglobin finally made it to the 8 range yesterday evening and the doctor decided to discharge me since the germy ICU environment is a risk to me. I left last night, so sick and still having so many problems to resolve. I will not able to receive radiation this week (and perhaps I will never receive anymore). I know of at least two procedures/biopsies pending for this week. If my hemoglobin continues to decline, more transfusions will be in my history.
My NIH oncologist also reminded us today that with four blood transfusions, my own clotting factors could have been altered. So some testing for this will happen this week.
And all of these new problems rest solidly on top of the mountain of other health challenges related to leukemia and infections. Please pray for my family, me and my medical team. Please pray that I will not develop blood clots from the estrogen (IV and oral). Please pray that the search for additional malignancies will continue to reveal nothing cancerous. Please pray for the blood loss to cease and the need for transfusions will conclude. Please pray for strength and grace to stand up under the enormous strain of so many things going wrong in my body.
I am reminded of this Scripture from Romans 4:
19 And not being weak in faith, he (Abraham) did not consider his own body, already dead (since he was about a hundred years old), and the deadness of Sarah’s womb. 20 He did not waver at the promise of God through unbelief, but was strengthened in faith, giving glory to God, 21 and being fully convinced that what He had promised He was also able to perform. 22 And therefore “it was accounted to him for righteousness.”
Abraham and Sarah longed for a son – but they were so very old. They did not look at their situation or consider the condition of their bodies. They didn’t waver at the promise of God. They were not doubtful or unbelieving. They grew in Faith and praised God. And that promised son was the answer to their prayers.
May I be able to replicate their faith-filled actions and witness this broken, failing body, restored and perfectly functioning. Please join me with prayers that are filled with praise, belief, and void of doubt and disbelief.
Monday, December 20, 2010
Congratulations, Sis!
Our oldest daughter graduated with her Masters Degree in the Nurse Practitioner program on Saturday. We are very proud of her academic achievements and we are certain that she will provide compassionate, competent care to many patients. First-hand, she has witnessed, the vital role that nurses or nurse practitioners play in healthcare. Our family has witnessed outstanding nursing and we have experienced detrimental, dangeorus nursing. Our daughter pays attention to the needs of her patients' families as well. She has walked in those shoes as a family member of an ill patient for many years with me.
Her Dad wired her mortarboard with LED lights and she stood out in the sea of blue at the commencement exercises. Take a glimpse to see if you can locate our daughter!
Update & Request for Prayer: December 20, 2010
Radiation was canceled again today due to my low blood counts. I received radiation on last Monday and then the two other fractions were canceled last week. It is time for my marrow to recover and produce some cells! My WBC, hemoglobin and platelets are all low. Please pray that bone marrow failure is not the problem. You might recall after the first couple of weeks of radiation in November, I had a similar problem with all of my counts dropping. We requested prayer and they recovered. I am trusting they will recover again since marrow failure would be a very serious development.
Before having labs drawn, I knew my hemoglobin was down in the 8 or 9 range because I can always hear a whooshing of my heart or blood flow in my ears when my hemoglobin is in that range and that happened all night. And I was correct! Between the whooshing and the cough, I only slept an hour all night. The doctor said he had never treated a patient who knows her body like I know mine.
All we can do is to pray and to be patient. Our plan was to have the 600 cGy cumulative dose completed on New Year's Eve, but that is not going to happen. I am looking at mid-January now before completing radiation. Just going three times weekly for the treatment is very tiring. I believe this week is Week 7.
The cough continues. We have received no new answers from the tests ordered last week. The EKG will be repeated on my heart on Wednesday of this week and I will return to radiation on Wednesday. More Neupogen is ordered and if my platelets recover some, I will receive acupuncture on Wednesday.
Thank you for your continued prayers.
Before having labs drawn, I knew my hemoglobin was down in the 8 or 9 range because I can always hear a whooshing of my heart or blood flow in my ears when my hemoglobin is in that range and that happened all night. And I was correct! Between the whooshing and the cough, I only slept an hour all night. The doctor said he had never treated a patient who knows her body like I know mine.
All we can do is to pray and to be patient. Our plan was to have the 600 cGy cumulative dose completed on New Year's Eve, but that is not going to happen. I am looking at mid-January now before completing radiation. Just going three times weekly for the treatment is very tiring. I believe this week is Week 7.
The cough continues. We have received no new answers from the tests ordered last week. The EKG will be repeated on my heart on Wednesday of this week and I will return to radiation on Wednesday. More Neupogen is ordered and if my platelets recover some, I will receive acupuncture on Wednesday.
Thank you for your continued prayers.
Wednesday, December 15, 2010
Looking for My Savior
This holiday season has been poignantly different for me. I have been too ill to enjoy the decorating and shopping and Christmas events that normally fill the calendar. Instead, hours commuting to the cancer center for lab work, radiation, doctors' appointments and tests have filled the calendar to over-flowing. Every year, it is my priority to retain my Christmas focus - Jesus IS the reason for the season - and I have usually succeeded.
This year, it hasn't been holiday hecticness that has distracted me, it has been the pain and suffering and all of the appointments. The fatigue from radiation has rocked me to my core. And today, I stopped amidst appointments at three doctors' offices, and realized I am failing miserably at remembering what all of this Christmas "stuff" is about. God, forgive me.
I am usually ever-listening to locate others in need at Christmas time, so that I can extend His love to them. My suffering and concerns have been looming so large this year, that, sadly, I have really just been thinking about myself. How did I ever allow leukemia to make me so inward looking, to the point where I am missing the blessing of helping others? I began reflecting and meditating on my shortcomings this Christmas season and asking for His help - looking for my Savior to lift my focus to Him and off of me and my challenges - they are all so temporary, as we know.
So tonight, on our drive home after hours in the car, shuffling from appointment to appointment, my husband said he was going to run in the grocery store to pick up something quick for dinner that he could prepare. I sat in the car while he shopped and God decided to drop me an opportunity to reach out to another in the spirit of Christmas. An elderly lady rode a motorized shopping cart out to her car parked across from us. She had several bags of groceries and crutches. I watched her hobble onto her crutches and I realized - God had just given me a way to serve Him. Exhausted, I left the warmth of the car and went to her and unloaded her groceries for her. I don't reflect on this to brag on my menial task, yet I reflect on it because today, God heard my prayers of sadness and repentance for not looking for ways to serve Him in the midst of medical mayhem. And He heard. And He answered. For the remaining ten days until Christmas, I will continue to look for my Savior and for His hurting people whom I can touch in any small way.
This year, it hasn't been holiday hecticness that has distracted me, it has been the pain and suffering and all of the appointments. The fatigue from radiation has rocked me to my core. And today, I stopped amidst appointments at three doctors' offices, and realized I am failing miserably at remembering what all of this Christmas "stuff" is about. God, forgive me.
I am usually ever-listening to locate others in need at Christmas time, so that I can extend His love to them. My suffering and concerns have been looming so large this year, that, sadly, I have really just been thinking about myself. How did I ever allow leukemia to make me so inward looking, to the point where I am missing the blessing of helping others? I began reflecting and meditating on my shortcomings this Christmas season and asking for His help - looking for my Savior to lift my focus to Him and off of me and my challenges - they are all so temporary, as we know.
So tonight, on our drive home after hours in the car, shuffling from appointment to appointment, my husband said he was going to run in the grocery store to pick up something quick for dinner that he could prepare. I sat in the car while he shopped and God decided to drop me an opportunity to reach out to another in the spirit of Christmas. An elderly lady rode a motorized shopping cart out to her car parked across from us. She had several bags of groceries and crutches. I watched her hobble onto her crutches and I realized - God had just given me a way to serve Him. Exhausted, I left the warmth of the car and went to her and unloaded her groceries for her. I don't reflect on this to brag on my menial task, yet I reflect on it because today, God heard my prayers of sadness and repentance for not looking for ways to serve Him in the midst of medical mayhem. And He heard. And He answered. For the remaining ten days until Christmas, I will continue to look for my Savior and for His hurting people whom I can touch in any small way.
Update & Request for Prayer: December 15, 2010
I will play "catch up" on my blog. It has been a medically eventful week (what's new?) so I will review the week's events. This is Week 6 of splenic irradiation for me (I have received 325 cGy of 600 cGy). Currently, each dose (or called a "fraction" in radiation) is 25 cGy. I began at 50 cGy per fraction but my counts could not tolerate that dose, so it was reduced. I had hoped to finish by the end of 2010, however, radiation will continue into January.
I continue to battle the pulmonary problems of coughing, wheezing and shortness of breath. So, I had a CT on Monday and it did not reveal any pneumonia, tumors, leukemic infiltrates in the lungs or fungal masses. That was all good news, however, it leaves us with many questions about what is causing the shortness of breath and cough. PCP (a dangerous form of pneumonia) remains a possibility since indolent PCP often will not reveal itself on CT or x-ray. Today, upon recommendation of my NIH doctor, a PCR test for PCP was ordered. In the morning, I will use a nebulizer with sterile water to collect a sputum sample. We will take that to the hospital and that should give us an idea if PCP is contributing to the cough.
The CT did reveal some new cardiac concerns and degeneration of my spine. I have never had heart concerns, so that was quite a shock. Many of the drugs I have taken can be damaging to the heart. Today, my doctor asked the nurse to perform an EKG. The doctor said today's EKG results are very concerning but her regular nurse was not there and the lady who did the EKG was new to the machine. So, my doctor wants to repeat the EKG early next week when her regular nurse is there before we panic. I truly cannot believe with everything else I am dealing with that now I have a cardiac concern. I knew that I had degenerative changes to my lower spine, but was not aware of the changes in my upper spine. Steroids can be detrimental to bones and I now live on daily steroids due to the failure of my adrenal glands.
Now, onto some better news! I received radiation on Monday, however, my counts were too low and radiation was canceled. Today my WBC is 2 - that is low and most of you know I usually have a high WBC. So the radiation is definitely at work - really working! My hemoglobin was decent and my platelets remain low. The remarkable news is that Monday's CT results revealed that the spleen is shrinking in size and there were no enlarged lymph nodes in my chest (enlarged lymph nodes remain in my neck, abdomen and under my arms).
Most exciting to me is the fact that my lymphocyte percentage today has gone from 99% to 57% (normal being 15%-41%). My ALC (Absolute Lymphocyte Count) has decreased by 96% since beginning radiation! Before long, I will have a normal lymphocyte count and I have never achieved that with any of my past five chemo/immunotherapy adventures! Remember, lymphocytes are the blood cell line that is cancerous - precisely, my leukemia is a cancer of the B-lymphocytes. T-Lymphocytes are included in these lymphocyte counts that are being walloped and I need God to protect as many of the "good" T-Lymphocytes as possible.
A WBC is not without risks to me. I received a Neupogen injection tonight and will tomorrow. With a WBC this low, I am supposed to avoid crowds. However, that will be impossible as our oldest daughter graduates Saturday with her Masters Degree in the Nurse Practitioner program (in a crowd of thousands, so I will be wearing a pretty pink mask!) There is no way I am going to miss that special event!
So please pray for God to protect me from further infections; for my marrow to be able to begin producing cells I need; for my heart concerns not to be serious; and for strength and energy to enjoy our daughter's graduation and reception on Saturday.
I continue to battle the pulmonary problems of coughing, wheezing and shortness of breath. So, I had a CT on Monday and it did not reveal any pneumonia, tumors, leukemic infiltrates in the lungs or fungal masses. That was all good news, however, it leaves us with many questions about what is causing the shortness of breath and cough. PCP (a dangerous form of pneumonia) remains a possibility since indolent PCP often will not reveal itself on CT or x-ray. Today, upon recommendation of my NIH doctor, a PCR test for PCP was ordered. In the morning, I will use a nebulizer with sterile water to collect a sputum sample. We will take that to the hospital and that should give us an idea if PCP is contributing to the cough.
The CT did reveal some new cardiac concerns and degeneration of my spine. I have never had heart concerns, so that was quite a shock. Many of the drugs I have taken can be damaging to the heart. Today, my doctor asked the nurse to perform an EKG. The doctor said today's EKG results are very concerning but her regular nurse was not there and the lady who did the EKG was new to the machine. So, my doctor wants to repeat the EKG early next week when her regular nurse is there before we panic. I truly cannot believe with everything else I am dealing with that now I have a cardiac concern. I knew that I had degenerative changes to my lower spine, but was not aware of the changes in my upper spine. Steroids can be detrimental to bones and I now live on daily steroids due to the failure of my adrenal glands.
Now, onto some better news! I received radiation on Monday, however, my counts were too low and radiation was canceled. Today my WBC is 2 - that is low and most of you know I usually have a high WBC. So the radiation is definitely at work - really working! My hemoglobin was decent and my platelets remain low. The remarkable news is that Monday's CT results revealed that the spleen is shrinking in size and there were no enlarged lymph nodes in my chest (enlarged lymph nodes remain in my neck, abdomen and under my arms).
Most exciting to me is the fact that my lymphocyte percentage today has gone from 99% to 57% (normal being 15%-41%). My ALC (Absolute Lymphocyte Count) has decreased by 96% since beginning radiation! Before long, I will have a normal lymphocyte count and I have never achieved that with any of my past five chemo/immunotherapy adventures! Remember, lymphocytes are the blood cell line that is cancerous - precisely, my leukemia is a cancer of the B-lymphocytes. T-Lymphocytes are included in these lymphocyte counts that are being walloped and I need God to protect as many of the "good" T-Lymphocytes as possible.
A WBC is not without risks to me. I received a Neupogen injection tonight and will tomorrow. With a WBC this low, I am supposed to avoid crowds. However, that will be impossible as our oldest daughter graduates Saturday with her Masters Degree in the Nurse Practitioner program (in a crowd of thousands, so I will be wearing a pretty pink mask!) There is no way I am going to miss that special event!
So please pray for God to protect me from further infections; for my marrow to be able to begin producing cells I need; for my heart concerns not to be serious; and for strength and energy to enjoy our daughter's graduation and reception on Saturday.
Friday, December 10, 2010
Update & Request for Prayer: December 10, 2010
It has been a challenging week. I received radiation on Wednesday, however, the cough and breathing concerns continued to worsen. My sinuses worsened on Wednesday, so I had a sinus endoscope procedure on Thursday.
I awoke during the night very nauseated - the five consecutive radiation treatments have caught up with me again and the nausea and fatigue have returned. Since I was awake, I checked my e-mail and my trusted family doctor had emailed me at 11 PM last night to inform me that gram negative rods were growing out on the cultures from the scope. Gram negative rods are bacteria that can be highly dangerous to the immune compromised patient - some gram negative infections can kill in less than 24 hours. Included in the gram negative rod family is pseudomonas, which can be a life-threatening infection for people like me. I have battled it in the past and it is a formidable foe.
So this morning, my family doctor and infectious disease doctor decided to have me desensitized to another antibiotic - an oral one- to take while we wait on the lab to identify the gram negative bacteria (and we all know how many times the lab fails to provide vital answers to us). If pseudomonas or other bacteria are identified over the weekend that are not sensitive to the arsenal of antibiotics that I am taking, then I will be admitted to ICU for "big gun" IV antibiotics.
I arrived at the cancer center where I had my blood drawn and they installed a heparin lock in my arm so that I could go over to radiation without the IV pole. My counts were too low today, so radiation was canceled. My body probably embraced the break as it fights this infection.
Please pray for this infection to clear without a hospital admission to ICU. Please pray that the nausea and fatigue from the radiation will improve. Please pray that the radiation is beating back my foe, leukemia. Please pray that my breathing and cough will improve.
I awoke during the night very nauseated - the five consecutive radiation treatments have caught up with me again and the nausea and fatigue have returned. Since I was awake, I checked my e-mail and my trusted family doctor had emailed me at 11 PM last night to inform me that gram negative rods were growing out on the cultures from the scope. Gram negative rods are bacteria that can be highly dangerous to the immune compromised patient - some gram negative infections can kill in less than 24 hours. Included in the gram negative rod family is pseudomonas, which can be a life-threatening infection for people like me. I have battled it in the past and it is a formidable foe.
So this morning, my family doctor and infectious disease doctor decided to have me desensitized to another antibiotic - an oral one- to take while we wait on the lab to identify the gram negative bacteria (and we all know how many times the lab fails to provide vital answers to us). If pseudomonas or other bacteria are identified over the weekend that are not sensitive to the arsenal of antibiotics that I am taking, then I will be admitted to ICU for "big gun" IV antibiotics.
I arrived at the cancer center where I had my blood drawn and they installed a heparin lock in my arm so that I could go over to radiation without the IV pole. My counts were too low today, so radiation was canceled. My body probably embraced the break as it fights this infection.
Please pray for this infection to clear without a hospital admission to ICU. Please pray that the nausea and fatigue from the radiation will improve. Please pray that the radiation is beating back my foe, leukemia. Please pray that my breathing and cough will improve.
Monday, December 6, 2010
An Update & Request for Prayer: December 6, 2010
What a day! What a day! I arrived at the cancer center before 8 AM and I was there for over nine hours to receive my IVIG treatment today. I don't know why the infusion lasted so long - usually it "only" takes around 8 hours. Others, who have not had serious reactions to the IVIG, are able to receive it in fewer hours. However, I have reacted negatively to it in the past, so I patiently wait for it to drop, drop, drop into my veins. The treatment is cumbersome, not without risks, and very expensive ($10,000 per month), yet, my infection rate has lessened with the IVIG and my number of hospitalizations has decreased,
I saw the clock approaching 5 PM and knew the radiation center was going to close before I could arrive there for my radiation treatment. Thankfully, the kind staff waited on me and it was going on six o-clock before I finished for the day.
The gram stains from my lungs revealed that there are gram positive cocci growing out. The cough is still deep and annoying. I anticipate some form of action tomorrow - either a CT of my lungs will be ordered, an appointment with the pulmonologist, or a change to IV medications. Since my T-Cells continue to decline (due to the radiation), a serious form of pneumonia, PCP is always a suspect. I am hopeful that a bronchoscopy and/or hospitalization is not in my future. There are too many Christmas "to do's" remaining for me to end up in the slammer.
I was neutropenic again, so more Neupogen injections have been ordered. My counts were low but stable enough for radiation today. As of today, I have received 275 cGy of 600 cGy of radiation that is planned. Slow and steady win the race, right?
Please pray for the complicated concerns that daily threaten my life. I want to see improvement before Christmas! I long to feel better and stronger. Thank you for praying.
I saw the clock approaching 5 PM and knew the radiation center was going to close before I could arrive there for my radiation treatment. Thankfully, the kind staff waited on me and it was going on six o-clock before I finished for the day.
The gram stains from my lungs revealed that there are gram positive cocci growing out. The cough is still deep and annoying. I anticipate some form of action tomorrow - either a CT of my lungs will be ordered, an appointment with the pulmonologist, or a change to IV medications. Since my T-Cells continue to decline (due to the radiation), a serious form of pneumonia, PCP is always a suspect. I am hopeful that a bronchoscopy and/or hospitalization is not in my future. There are too many Christmas "to do's" remaining for me to end up in the slammer.
I was neutropenic again, so more Neupogen injections have been ordered. My counts were low but stable enough for radiation today. As of today, I have received 275 cGy of 600 cGy of radiation that is planned. Slow and steady win the race, right?
Please pray for the complicated concerns that daily threaten my life. I want to see improvement before Christmas! I long to feel better and stronger. Thank you for praying.
Perfect Tree Search
After a surprise eight-inch snow blanketed our property on Saturday,
we ventured through the woods of a local Christmas tree farm
to locate the perfect tree for our oldest daughter and son-in-law.
It was a magical Christmas moment - a chill in the air, snowflakes drifting to earth,
and the crunch of eight inches of snow underfoot.
After much searching, she located her perfect tree.
I thought I'd share some photos of our morning.
Friday, December 3, 2010
Radiation Update: December 3, 2010
I have not been well this week, so I have lagged behind with my blog updates. With radiation and its effects on my blood counts, we were aware that my immune system would take further hits to its already fractured status. An infection in my lungs has taken up residence and has worsened all week. I saw my Infectious Disease doctor yesterday and he made yet another antibiotic change and if this infection worsens much more, I know I will be admitted to the hospital for IV medications. I have used oxygen off and on all week and this morning I woke up to my chest rattling and whistling. Having heard about the "death rattles", I was a bit concerned to hear such a ruckus emitting when I exhaled.
This morning, I called my radiation oncologist and he ordered cultures, labs and we decided to go ahead with today's radiation treatment. I actually received all three of this week's treatments. It appears that I am tolerating the lower (25 cGy) dose better than the larger dose(50 cGy) I received the first week. My counts have not bottomed out as drastically with the lower dose, however, we are not seeing the improvements in counts either. All of this is such a delicate balancing act - using enough radiation to kill the leukemic lymphocytes without eliminating my vital neutrophils, T-Cells, platelets and red blood cells. As soon as my counts begin to recover, we strike with the radiation again, knowing the recovered counts will again fall.
A CT Scan earlier this week revealed that after four weeks of treatment, my spleen has not shrunk and remains the same in size. That was disappointing, yet, I still contend that it is too early to label this treatment a success or a failure. The lymph nodes in my neck feel smaller, however, the enlarged lymph nodes in my abdomen and around my aorta and heart were unchanged on the CT Scan.
I will receive some Neupogen injections over the weekend and then on Monday, I will receive my all day IVIG treatment at the cancer center followed by radiation. I had hoped to finish radiation before Christmas but that will not happen. I do not foresee an end to radiation until perhaps late January with Christmas Eve and New Year's Eve being sabotaged by radiation treatments.
This morning, I called my radiation oncologist and he ordered cultures, labs and we decided to go ahead with today's radiation treatment. I actually received all three of this week's treatments. It appears that I am tolerating the lower (25 cGy) dose better than the larger dose(50 cGy) I received the first week. My counts have not bottomed out as drastically with the lower dose, however, we are not seeing the improvements in counts either. All of this is such a delicate balancing act - using enough radiation to kill the leukemic lymphocytes without eliminating my vital neutrophils, T-Cells, platelets and red blood cells. As soon as my counts begin to recover, we strike with the radiation again, knowing the recovered counts will again fall.
A CT Scan earlier this week revealed that after four weeks of treatment, my spleen has not shrunk and remains the same in size. That was disappointing, yet, I still contend that it is too early to label this treatment a success or a failure. The lymph nodes in my neck feel smaller, however, the enlarged lymph nodes in my abdomen and around my aorta and heart were unchanged on the CT Scan.
I will receive some Neupogen injections over the weekend and then on Monday, I will receive my all day IVIG treatment at the cancer center followed by radiation. I had hoped to finish radiation before Christmas but that will not happen. I do not foresee an end to radiation until perhaps late January with Christmas Eve and New Year's Eve being sabotaged by radiation treatments.
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