Yesterday was an exhausting tour of medical procedures. The PICC line is inserted into the right basilic vein in my upper arm. On x-ray, I could see it snaking up that vein, across my upper chest and downward toward a major vein near my heart. As the sterility and silence of the radiology cath lab tempted to steal my peace yesterday, through my earbuds played the 33 Miles song, "Jesus Calling". As the Holy Spirit always comforts me, He allowed these musical lyrics to resound into my ears and throughout my spirit as my arm and vein was cut and the wired line threaded through the vein:
You may be scared to death
It's okay you're not alone
I won't let you go
You may think the sky above is falling
Can you hear Jesus calling?
I was not sedated and had some discomfort and bleeding with the PICC but it was a welcome companion today when I consider all of the needle pokes I would have had with 3 different lab draws and two IVs just today! It is bruised and tender but should feel better in a few days. I am going to beware of the change of seasons. I realized yesterday just as spring slipped into summer, I had a PICC procedure and now summer is transforming into autumn and the PICC procedure has returned.
I continue with the two daily IVs: one antifungal and one antibiotic. We are awaiting more culture and lab reports later today and tomorrow. I know weeks and not just days of additional IVs are ahead for me. Please agree in prayer with me that they will help and not harm me. I stand amazed at what a human body and a God filled life can endure. He equips me and gives me daily doses of courage and strength.
My creatinine level has remained steady so my kidneys are keeping up. I continue taking prescription potassium for low potassium. Most striking, my hemoglobin has dipped into the 9 range ~ no wonder I am exhausted. Transfusion discussions begin when hemoglobin reaches 8, so please pray I will not require a blood transfusion. Also, my platelets took a significant dive. It is such a challenge to keep the human body properly functioning on all levels. The Lord certainly created an amazing body to house our spirit man.
Thursday, September 23, 2010
Wednesday, September 22, 2010
Urgent Update & Request for Prayer: September 21, 2010
Please pray as I worsened a lot overnight on Monday. Tuesday morning I learned that I have gram negative rods growing from my lungs in addition to the fungus. Gram negative rods always cause the most alarm since they are a dangerous class of organisms, especially when in the lungs. My doctors suspect pseudomonas and I have skin lesions that also point to pseudomonas. I left my family doctor's office at 10 AM on Tuesday and returned to the cancer center. I was desensitized to IV Tobramycin and will receive that drug along with the IV Micafungin that I have been receiving for the past 10 days. My Infectious Disease doctor extended the IV antifungal for a total of a month instead of 2 weeks, so that will not be ending on this Friday as we had planned. Since the use of more antibiotics can increase fungal growth, discontinuing the IV antifungal was not an option right now.
We will leave early Wednesday morning. I have to be in Indianapolis at 9AM for another PICC line to be installed. I am losing vein access again and we ask for your prayers that I will have no reactions, complications and infections from this procedure and the PICC line itself.
We will leave the hospital around 10:30 and have a two hour drive to the cancer center where I need to be at 12:30 for the IV antibiotic and antifungal. It will probably be 6 before I am finished. I am so weak and having trouble breathing I know the Lord will have to carry me tomorrow.
My local oncologist began Neupogen injections tonight and although I am not neutropenic today, I will receive it daily until we get the upper hand on these lung infections and to help prevent infections from tomorrow's PICC installation. Also, my very helpful insurance case manager has obtained approval for at home oxygen for me so I am eager to have that delivered to ease my labored breathing. It is nearing 2AM and I am all too aware that I have to be awake in 4 hours, however, I am coughing and wheezing so much I cannot lay down and breathe easily.
I need another miracle. Please pray I do not end up on a ventilator and the infections will quickly respond to these drugs. Also pray for protection of my kidneys. These drugs are both harsh on kidneys and earlier this week my creatinine level (indicates kidney challenges) was creeping upward. The Tobramycin levels have to be carefully monitored because in addition to kidney damage, the Tobra can cause deafness.
Thank you for praying and if anyone is inclined to pray and fast for me, now is one of those times that I need the prayerful support of others. I taught Lil Man before he was one year old to fold his hands in the prayer position when I would ask him to say prayers for Grammy. Now his Mommy has taught him this - after he puts his hands together to pray, she asks him what he is praying for Grammy and he replies, "Miracle!" It brings tears to my eyes because that is what Grammy truly needs right now.
May I also request prayer for one of our daughters who was in a wreck this evening...three young men ran a stop sign and their cars collided. Fortunately, an off duty policeman was following our daughter and witnessed the other car run the stop sign. She is home from the hospital but has a sprained back and neck and contussions. The doctors told her to expect alot of pain tomorrow. Please pray for her to heal quickly, her pain to be minimal and thank God with us for His divine hand of protection upon her. The policeman told her how near she came to the other car crashing into her driver's side door.
With love and gratitude ........
We will leave early Wednesday morning. I have to be in Indianapolis at 9AM for another PICC line to be installed. I am losing vein access again and we ask for your prayers that I will have no reactions, complications and infections from this procedure and the PICC line itself.
We will leave the hospital around 10:30 and have a two hour drive to the cancer center where I need to be at 12:30 for the IV antibiotic and antifungal. It will probably be 6 before I am finished. I am so weak and having trouble breathing I know the Lord will have to carry me tomorrow.
My local oncologist began Neupogen injections tonight and although I am not neutropenic today, I will receive it daily until we get the upper hand on these lung infections and to help prevent infections from tomorrow's PICC installation. Also, my very helpful insurance case manager has obtained approval for at home oxygen for me so I am eager to have that delivered to ease my labored breathing. It is nearing 2AM and I am all too aware that I have to be awake in 4 hours, however, I am coughing and wheezing so much I cannot lay down and breathe easily.
I need another miracle. Please pray I do not end up on a ventilator and the infections will quickly respond to these drugs. Also pray for protection of my kidneys. These drugs are both harsh on kidneys and earlier this week my creatinine level (indicates kidney challenges) was creeping upward. The Tobramycin levels have to be carefully monitored because in addition to kidney damage, the Tobra can cause deafness.
Thank you for praying and if anyone is inclined to pray and fast for me, now is one of those times that I need the prayerful support of others. I taught Lil Man before he was one year old to fold his hands in the prayer position when I would ask him to say prayers for Grammy. Now his Mommy has taught him this - after he puts his hands together to pray, she asks him what he is praying for Grammy and he replies, "Miracle!" It brings tears to my eyes because that is what Grammy truly needs right now.
May I also request prayer for one of our daughters who was in a wreck this evening...three young men ran a stop sign and their cars collided. Fortunately, an off duty policeman was following our daughter and witnessed the other car run the stop sign. She is home from the hospital but has a sprained back and neck and contussions. The doctors told her to expect alot of pain tomorrow. Please pray for her to heal quickly, her pain to be minimal and thank God with us for His divine hand of protection upon her. The policeman told her how near she came to the other car crashing into her driver's side door.
With love and gratitude ........
Monday, September 20, 2010
The Kind of Life He Lived
I Peter 2:18-25 (The Mesaage)
"You who are servants, be good servants to your masters — not just to good masters, but also to bad ones. What counts is that you put up with it for God's sake when you're treated badly for no good reason. There's no particular virtue in accepting punishment that you well deserve. But if you're treated badly for good behavior and continue in spite of it to be a good servant, that is what counts with God. This is the kind of life you've been invited into, the kind of life Christ lived. He suffered everything that came his way so you would know that it could be done, and also know how to do it, step-by-step. He never did one thing wrong, not once said anything amiss. They called him every name in the book and he said nothing back. He suffered in silence, content to let God set things right. He used his servant body to carry our sins to the Cross so we could be rid of sin, free to live the right way. His wounds became your healing. You were lost sheep with no idea who you were or where you were going. Now you're named and kept for good by the Shepherd of your souls."
"You who are servants, be good servants to your masters — not just to good masters, but also to bad ones. What counts is that you put up with it for God's sake when you're treated badly for no good reason. There's no particular virtue in accepting punishment that you well deserve. But if you're treated badly for good behavior and continue in spite of it to be a good servant, that is what counts with God. This is the kind of life you've been invited into, the kind of life Christ lived. He suffered everything that came his way so you would know that it could be done, and also know how to do it, step-by-step. He never did one thing wrong, not once said anything amiss. They called him every name in the book and he said nothing back. He suffered in silence, content to let God set things right. He used his servant body to carry our sins to the Cross so we could be rid of sin, free to live the right way. His wounds became your healing. You were lost sheep with no idea who you were or where you were going. Now you're named and kept for good by the Shepherd of your souls."
Spiritual Challenges
"Live as though Christ died yesterday, rose from the grave today, and is coming back tomorrow." --Theodore Epp
If we knew with certainty that Christ was returning tomorrow, imagine the spiritual preparedness we would do today. Unconfessed sin would be confessed. Unforgiveness of others would take priority over everything on our calendars. A major house cleaning of hearts would occur. Every petty grievance and problem of today would be forgotten as we prepared for the Heavenly Rapture of tomorrow. And although Scripture teaches us that "no one will know the day or hour" of Christ's return, this is exactly how we should be living everyday because tomorrow could be the day of His Return. Are we willing to risk sin flooded hearts and unforgiveness in our lives if Christ could return tomorrow? All of the trappings, temptations, and trials of this world need to be secondary to the spiritual preparation of our lives as we await that glorious day when Christ returns for His children.
"Christians ought not be smothered in fear. There is a spiritual readiness, where we return to having the peace of God stand guard over our hearts and minds. What an incredible witness it is to a lost and fearful society when the Christian acts like a child of God, living under the sovereignty of the Heavenly Father. The Christian needs to walk in peace, so no matter what happens they will be able to bear witness to a watching world." --Henry Blackaby
Fear can be a paralyzing sin in our lives. I tell you this because living as I have lived, under the umbrella of disease and death threats for over a decade, I would have been paralyzed long ago had the Lord not delivered me from the fear and threat that death tries to impose even on Christians. The more I studied His Word and about the glorious promise of life eternal in Heaven, death began to "lose its sting". Some may just call me ignorant and in denial, living everyday as though I am a healed and whole person despite death declarations made over me by some of the most brilliant scientific minds in this world. However, I can tell you firsthand that walking in this kind of peace is a precious gift from the Lord. I am grateful when others notice the peace and power that I walk in because I know it has nothing to do about me but has everything to do about a life lived consecrated to God. Often times my prayer is for my faith and peace not to falter as the days become more and more challenging. Nothing pleases me more than for my life wrought with disease and suffering to be a testament to the world around me of God's faithfulness.
"The trouble with nearly everybody who prays is that he says, "Amen" and runs away before God has a chance to reply. Listening to God is far more important than giving Him your ideas." --Frank Laubach
When I read this quote, it really struck home. Sometimes we are true blabber mouths when praying. Acting as if our mortal words could even compare to knowing what we truly need when compared to the all knowing God of the Universe. And listening does not mean sitting and waiting for God to give a shout from the Heavenlies with the answer to our prayer request. Listening is being still before God. Listening is praying and reading God's Word - have you ever noticed that when we read His Word, many of our deepest concerns and questions are answered on the pages of His Holy Word? Studying God's Will for our lives also reveals answers to us. God's Word reveals His Will for His children. If believer or unbeliever never opens the pages of the Bible, how can he or she ever learn the life traits, paths and directions for our lives?
May each of us be challenged by these quotes today.
If we knew with certainty that Christ was returning tomorrow, imagine the spiritual preparedness we would do today. Unconfessed sin would be confessed. Unforgiveness of others would take priority over everything on our calendars. A major house cleaning of hearts would occur. Every petty grievance and problem of today would be forgotten as we prepared for the Heavenly Rapture of tomorrow. And although Scripture teaches us that "no one will know the day or hour" of Christ's return, this is exactly how we should be living everyday because tomorrow could be the day of His Return. Are we willing to risk sin flooded hearts and unforgiveness in our lives if Christ could return tomorrow? All of the trappings, temptations, and trials of this world need to be secondary to the spiritual preparation of our lives as we await that glorious day when Christ returns for His children.
"Christians ought not be smothered in fear. There is a spiritual readiness, where we return to having the peace of God stand guard over our hearts and minds. What an incredible witness it is to a lost and fearful society when the Christian acts like a child of God, living under the sovereignty of the Heavenly Father. The Christian needs to walk in peace, so no matter what happens they will be able to bear witness to a watching world." --Henry Blackaby
Fear can be a paralyzing sin in our lives. I tell you this because living as I have lived, under the umbrella of disease and death threats for over a decade, I would have been paralyzed long ago had the Lord not delivered me from the fear and threat that death tries to impose even on Christians. The more I studied His Word and about the glorious promise of life eternal in Heaven, death began to "lose its sting". Some may just call me ignorant and in denial, living everyday as though I am a healed and whole person despite death declarations made over me by some of the most brilliant scientific minds in this world. However, I can tell you firsthand that walking in this kind of peace is a precious gift from the Lord. I am grateful when others notice the peace and power that I walk in because I know it has nothing to do about me but has everything to do about a life lived consecrated to God. Often times my prayer is for my faith and peace not to falter as the days become more and more challenging. Nothing pleases me more than for my life wrought with disease and suffering to be a testament to the world around me of God's faithfulness.
"The trouble with nearly everybody who prays is that he says, "Amen" and runs away before God has a chance to reply. Listening to God is far more important than giving Him your ideas." --Frank Laubach
When I read this quote, it really struck home. Sometimes we are true blabber mouths when praying. Acting as if our mortal words could even compare to knowing what we truly need when compared to the all knowing God of the Universe. And listening does not mean sitting and waiting for God to give a shout from the Heavenlies with the answer to our prayer request. Listening is being still before God. Listening is praying and reading God's Word - have you ever noticed that when we read His Word, many of our deepest concerns and questions are answered on the pages of His Holy Word? Studying God's Will for our lives also reveals answers to us. God's Word reveals His Will for His children. If believer or unbeliever never opens the pages of the Bible, how can he or she ever learn the life traits, paths and directions for our lives?
May each of us be challenged by these quotes today.
No Match for God
Everyday when I travel to pick up our grandson at his Mommy's office, we pass two large lion statues. He insists we honk and "Roaaaaaar" at the lions everyday. One day as I glanced at the lions in my rear view mirror, the story of Daniel in the lions' den scurried through my mind.
This Biblical accounts begins by telling us about Daniel's respected character and the positive influence he had on those around him. He knew a personal God and it reflected in all that he said and did. Such should be our goal in life. Others attempted to find faults and accuse Daniel, however, the Bible tells us, "...They could find no corruption in him, because he was trustworthy and neither corrupt or negligent." What an honorable statement to be made about Daniel and a statement that each Christian should make his or her goal to attain.
The corrupt government (is anyone listening?) decided that if anyone attempted to pray to anyone other than the King, that he would be tossed into the lions' den. When this example of arrogance and misuse of political power exists, whether in the time of Daniel or in 2010, God will only allow it for so long. Despite corrupt governments' best efforts, God will always intervene and rescue His children.
When Daniel learned of this decree, did he hunker down and stop praying to his God, our God? Did he allow fear to buckle his knees and seal his lips, never to utter praise or prayer to the God of the Universe? Never in a million years! Daniel threw open his window and not once, not twice, but three times daily he fell to his knees and prayed and praised. How many times in our lives do the threats of others or the fear of what others might think, keep us from praying and praising God as He desires?
Daniel was confronted about his acts of faith by some of the King's cronies and they reported his disregard to the King's orders to the King. I find it intriguing that initially we are informed that the King was "greatly distressed" when he heard the reports about Daniel.
Daniel was forced into the lion's den. All thoughts of a possible human escape were thwarted when a large stone was placed at the opening. Knowing that the blood of Daniel would be upon him, the king had a sleepless, restless night. When we operate outside of God's will and plan for our lives, do you recognize the same tossing and turning of our spirits? We are uneasy and not at peace in our souls whenever disobedience reigns.
Much to the relief of the King, he learned that God had protected Daniel through the night. Hungry lions are not known to sit idly by and observe their prey but that is exactly what had happened when God had intervened as David's Protector. Not even a scratch could be found on Daniel's body, much to the King's relief.
The King's heart was opened to the sovereignty of God that day. He openly expressed his new found faith to the people of his kingdom. He testified of God's endurance and dominion over the earth. A life changed by the intervention and power of God Almighty is an amazing miracle. The stoniest of hearts and most evil perpetrators can be reborn when they experience the power, grace, love and forgiveness of God.
Often times, as God's children (just like Daniel) we must endure difficult life experiences. When I read this passage of Scripture it inspires me when I consider the faith and lack of fear that Daniel exhibits. He lived an obedient life despite the chances it could threaten his physical life. No mention of fear or trembling is made when Daniel learns of his destination with the lions. And in the end we learn that God spared Daniels' life and he continued to prosper. May we replicate this example of faith in the midst of dire circumstances.
This Biblical accounts begins by telling us about Daniel's respected character and the positive influence he had on those around him. He knew a personal God and it reflected in all that he said and did. Such should be our goal in life. Others attempted to find faults and accuse Daniel, however, the Bible tells us, "...They could find no corruption in him, because he was trustworthy and neither corrupt or negligent." What an honorable statement to be made about Daniel and a statement that each Christian should make his or her goal to attain.
The corrupt government (is anyone listening?) decided that if anyone attempted to pray to anyone other than the King, that he would be tossed into the lions' den. When this example of arrogance and misuse of political power exists, whether in the time of Daniel or in 2010, God will only allow it for so long. Despite corrupt governments' best efforts, God will always intervene and rescue His children.
When Daniel learned of this decree, did he hunker down and stop praying to his God, our God? Did he allow fear to buckle his knees and seal his lips, never to utter praise or prayer to the God of the Universe? Never in a million years! Daniel threw open his window and not once, not twice, but three times daily he fell to his knees and prayed and praised. How many times in our lives do the threats of others or the fear of what others might think, keep us from praying and praising God as He desires?
Daniel was confronted about his acts of faith by some of the King's cronies and they reported his disregard to the King's orders to the King. I find it intriguing that initially we are informed that the King was "greatly distressed" when he heard the reports about Daniel.
Daniel was forced into the lion's den. All thoughts of a possible human escape were thwarted when a large stone was placed at the opening. Knowing that the blood of Daniel would be upon him, the king had a sleepless, restless night. When we operate outside of God's will and plan for our lives, do you recognize the same tossing and turning of our spirits? We are uneasy and not at peace in our souls whenever disobedience reigns.
Much to the relief of the King, he learned that God had protected Daniel through the night. Hungry lions are not known to sit idly by and observe their prey but that is exactly what had happened when God had intervened as David's Protector. Not even a scratch could be found on Daniel's body, much to the King's relief.
The King's heart was opened to the sovereignty of God that day. He openly expressed his new found faith to the people of his kingdom. He testified of God's endurance and dominion over the earth. A life changed by the intervention and power of God Almighty is an amazing miracle. The stoniest of hearts and most evil perpetrators can be reborn when they experience the power, grace, love and forgiveness of God.
Often times, as God's children (just like Daniel) we must endure difficult life experiences. When I read this passage of Scripture it inspires me when I consider the faith and lack of fear that Daniel exhibits. He lived an obedient life despite the chances it could threaten his physical life. No mention of fear or trembling is made when Daniel learns of his destination with the lions. And in the end we learn that God spared Daniels' life and he continued to prosper. May we replicate this example of faith in the midst of dire circumstances.
Sunday, September 19, 2010
Update & Request for Prayer: September 19, 2010
We just returned from the hospital, finishing my 10th day of IV's. On Friday we learned my calcium and potassium levels were low so I am taking prescription potassium and labs will be drawn again tomorrow. My creatinine level is elevated so my kidneys must be revolting over excreting so many medications.
Tomorrow I will receive my usual IVIG treatment for about 8 hours then they will premedicate me again and I will receive the IV antifungal, so it will be a long day.
My cough continues so as of today it appears that the IVs won't end on Friday as was the original plan. I hope we will learn something from the fungal IDs and sensitivities this week.
I know I am really run down because despite daily IV steroids, I do not have the false energy the IV steroids always provide for me. I am moving like a slug and you know how slow slugs move!
My mind and spirit keep repeating: "This is only temporary. This is only temporary!"
And to my family and friends: Thanks for your prayers, dinner delivery, cards, and transportation to all of these appointments.
Tomorrow I will receive my usual IVIG treatment for about 8 hours then they will premedicate me again and I will receive the IV antifungal, so it will be a long day.
My cough continues so as of today it appears that the IVs won't end on Friday as was the original plan. I hope we will learn something from the fungal IDs and sensitivities this week.
I know I am really run down because despite daily IV steroids, I do not have the false energy the IV steroids always provide for me. I am moving like a slug and you know how slow slugs move!
My mind and spirit keep repeating: "This is only temporary. This is only temporary!"
And to my family and friends: Thanks for your prayers, dinner delivery, cards, and transportation to all of these appointments.
Thursday, September 16, 2010
An Update & Request for Prayer: September 16, 2010
Thank you for your prayers - I am back on track and tolerating the IV antifungal without anaphylactic drug reactions! The premedications seem to be holding the reactions back, although I don't relish receiving daily IV steroids (because steroids just further suppress immunity and fungal infections thrive with steroids). This is not a good situation for me but this is one of those times that we have to make tough decisions to keep me alive. I must receive this drug, so we will attempt to daily repair the damage that the steroids do.
Today I learned that my neutrophils dropped by almost 3000 since Monday. This drug is known to wipe out neutrophils, so the doctor ordered Neupogen injections. Again, a medication fixes one problem and then causes another problem. I received an injection today and will receive one at the cancer center tomorrow. Then Kevin will give the Neupogen to me at home over the weekend. We fix one problem and then another problem needs addressed. I am thankful that my veins are barely holding up - but so far I have avoided having to go for another PICC line installation.
Normally IV steroids give me all of this false energy. I go night after night without sleeping and usually I organize closets, drawers, whatever stands still. It is a bit neurotic, I will admit. Yet, it is always nice to have a shot of energy since I am always so fatigued from the leukemia. I am so worn out from this summer long medical marathon that my steroids are not even enough to get me moving this time! My mind still wants to organize but my body just comes home and collapses on the sofa, with a little brown faced dog tucked behind the bend of my knees.
How I spent my summer vacation: I have spent 13 days in Intensive Care this summer. I have spent 43 days at the cancer center receiving IV's of some variation. I have tossed in two sinus endoscopes, CT Scans, x-rays, a PICC line installation, a bronchoscopy, and 52 lab draws. And in my spare time, I have had 19 doctors' appointments. My summer "vacation" activities have cost over $150,000. What a trip I could have taken with that kind of cash.
No wonder I am exhausted ......
Today I learned that my neutrophils dropped by almost 3000 since Monday. This drug is known to wipe out neutrophils, so the doctor ordered Neupogen injections. Again, a medication fixes one problem and then causes another problem. I received an injection today and will receive one at the cancer center tomorrow. Then Kevin will give the Neupogen to me at home over the weekend. We fix one problem and then another problem needs addressed. I am thankful that my veins are barely holding up - but so far I have avoided having to go for another PICC line installation.
Normally IV steroids give me all of this false energy. I go night after night without sleeping and usually I organize closets, drawers, whatever stands still. It is a bit neurotic, I will admit. Yet, it is always nice to have a shot of energy since I am always so fatigued from the leukemia. I am so worn out from this summer long medical marathon that my steroids are not even enough to get me moving this time! My mind still wants to organize but my body just comes home and collapses on the sofa, with a little brown faced dog tucked behind the bend of my knees.
How I spent my summer vacation: I have spent 13 days in Intensive Care this summer. I have spent 43 days at the cancer center receiving IV's of some variation. I have tossed in two sinus endoscopes, CT Scans, x-rays, a PICC line installation, a bronchoscopy, and 52 lab draws. And in my spare time, I have had 19 doctors' appointments. My summer "vacation" activities have cost over $150,000. What a trip I could have taken with that kind of cash.
No wonder I am exhausted ......
Wednesday, September 15, 2010
Exhausted: A BRIEF update
I sensed the prayers of many today. I was overflowing with God's peace, courage, and no fear as the first drop of the IV that had induced the anaphylactic reaction yesterday, flowed into my veins. Everything went flawlessly and I tolerated the re~desensitization today.
Tomorrow, I will receive the first full dose since Tuesday's reaction. Please pray for me at 2 PM ET. Labs will be drawn tomorrow to check how my kidneys and liver are functioning with all of these medicines to cycle through my system and to see if I need additional Neupogen shots.
Although I sometimes feel like a captive to leukemia, trapped in this body that requires unending medicines, treatments and procedures. Then I look UP and am gloriously reminded that just as leukemia has taken up temporary occupancy in my body that the Holy Spirit resides permanently inside me. No difficult day will ever separate us from the love of Christ. Thank You, Lord.
Tomorrow, I will receive the first full dose since Tuesday's reaction. Please pray for me at 2 PM ET. Labs will be drawn tomorrow to check how my kidneys and liver are functioning with all of these medicines to cycle through my system and to see if I need additional Neupogen shots.
Although I sometimes feel like a captive to leukemia, trapped in this body that requires unending medicines, treatments and procedures. Then I look UP and am gloriously reminded that just as leukemia has taken up temporary occupancy in my body that the Holy Spirit resides permanently inside me. No difficult day will ever separate us from the love of Christ. Thank You, Lord.
Tuesday, September 14, 2010
May I Request More Prayers?
As my faithful team of intercessory prayer warriors pray for me, I would like to request that you pray for a couple of dear people. Some of you might recall me asking you to pray for Dr. H. He is a well~known leukemia specialist from the UK. He has wisely advised me from afar about my leukemia journey. He has been battling his own cancer war and will resume chemotherapy this month. Please pray for him. He is a devout man of God and spreader of the Gospel.
Also, a fellow leukemia warrior, wife and. Mother named Penny has been passing through deep waters . Please pray for strength for her and her family. Please pray for all of her counts to recover. Please pray for God to restore her to health.
With heartfelt gratitude for each prayer.
Also, a fellow leukemia warrior, wife and. Mother named Penny has been passing through deep waters . Please pray for strength for her and her family. Please pray for all of her counts to recover. Please pray for God to restore her to health.
With heartfelt gratitude for each prayer.
Urgent Update & Request for Prayer: September 14, 2010
God spared my life today. I went for Day 5 of the IV antifungal and within 5 minutes of the drug infusing, I went into an anaphylactic drug reaction. I always tell anyone who treats me never to assume that I won't have a drug reaction after several safely administered infusions -these anaphylactic reactions have never "played" by the rules that anaphylaxis is associated with first doses. How correct that statement had been!
I had driven myself, so I was alone with this happening. I never felt fear but truly had God's peace. IV drugs reversed the reaction and I did not have to be intubated. Praise the Lord.
I already had an appointment scheduled with my family doctor after today's IV. So that was a well orchestrated plan. After the reaction, they asked me what family they should call and I told them none that I could drive myself to the doctor's appointment. (They had immediately stopped the IV and the doctor decided since I was still wheezing and having trouble breathing even after the IV drugs used to reverse the anaphylaxis, that it would be too risky to retry the IV today).
The nurse called my daughter who works in the same hospital where I was and they told me that they were taking my keys that I was not going to drive. Kevin picked me up and took me to the next appointment. Now I am going to be dependent upon hitching a ride with someone everyday since I cannot drive there alone. I hate losing my independence.
My family doctor confirmed what my heart knew - I have to go and reface this drug tomorrow as I cannot leave a fungal infection in my lungs untreated. Please pray tomorrow as they will desensitize me again using heavy premedications beginning at 1:30 PM ET and infusing until around 5 PM ET. This is always one of the most challenging tasks I face - having to infuse a drug into my veins that has almost killed me.
I am very, very weak tonight after going through anaphylaxis. The insurance rejected the milk request, however, my insurance case manager is resubmitting it with another request for payment. She did a cost analysis showing that we have spent nearly $150,000 since June treating infections, thinking the bottom line might make them reconsider that $400 + for milk each month would be a real bargain if it could render me infection free. So please continue to pray for the coverage to be approved.
I had driven myself, so I was alone with this happening. I never felt fear but truly had God's peace. IV drugs reversed the reaction and I did not have to be intubated. Praise the Lord.
I already had an appointment scheduled with my family doctor after today's IV. So that was a well orchestrated plan. After the reaction, they asked me what family they should call and I told them none that I could drive myself to the doctor's appointment. (They had immediately stopped the IV and the doctor decided since I was still wheezing and having trouble breathing even after the IV drugs used to reverse the anaphylaxis, that it would be too risky to retry the IV today).
The nurse called my daughter who works in the same hospital where I was and they told me that they were taking my keys that I was not going to drive. Kevin picked me up and took me to the next appointment. Now I am going to be dependent upon hitching a ride with someone everyday since I cannot drive there alone. I hate losing my independence.
My family doctor confirmed what my heart knew - I have to go and reface this drug tomorrow as I cannot leave a fungal infection in my lungs untreated. Please pray tomorrow as they will desensitize me again using heavy premedications beginning at 1:30 PM ET and infusing until around 5 PM ET. This is always one of the most challenging tasks I face - having to infuse a drug into my veins that has almost killed me.
I am very, very weak tonight after going through anaphylaxis. The insurance rejected the milk request, however, my insurance case manager is resubmitting it with another request for payment. She did a cost analysis showing that we have spent nearly $150,000 since June treating infections, thinking the bottom line might make them reconsider that $400 + for milk each month would be a real bargain if it could render me infection free. So please continue to pray for the coverage to be approved.
Monday, September 13, 2010
Update & Request for Prayer: September 13, 2010
Day IV of the IV treatment is over! My fevers are trending downward, so that is a positive indicator that the infection is responding. Also, my platelets and hemoglobin are trending upward, another positive sign and indicator that the infection is being walloped with the plethora of antimicrobials I am taking.
After three days of Neupogen injections, my ANC (Absolute Neutrophil Count) has improved and I did not require a shot today! The Mighty Milk II Experiment began today and I drank my first dose of milk (disguised in pomegranate and blueberry juice). We will recheck my T-Cells and Natural Killer Cells (both cells of the immune system) in a month to see if any improvement has resulted from the experiment.
Please pray that we can locate a vein for the IV tomorrow.
I look forward to the day when I can report that I am infection free! Keep praying and believing.
After three days of Neupogen injections, my ANC (Absolute Neutrophil Count) has improved and I did not require a shot today! The Mighty Milk II Experiment began today and I drank my first dose of milk (disguised in pomegranate and blueberry juice). We will recheck my T-Cells and Natural Killer Cells (both cells of the immune system) in a month to see if any improvement has resulted from the experiment.
Please pray that we can locate a vein for the IV tomorrow.
I look forward to the day when I can report that I am infection free! Keep praying and believing.
Sunday, September 12, 2010
An Update & Request for Prayer: September 12, 2010
I finished Day 3 of the IV treatments at the hospital. Tomorrow through Friday I will return to the Cancer Center. Last night when I returned home, we realized that my feet and ankles had swollen to nearly double in size. I didn't feel well and dozed off. I awoke around midnight and realized we had forgotten my Neupogen injection. Kevin administered that and within a couple of hours, Neupogen's infamous side effect of deep bone pain kicked in. It was a short night and I had to be back at the hospital at 11:30 this morning.
My doctor said today that I am taking twice the IV dose that I received in June of this drug. Edema ~ swelling~ can be caused by this medication so that might explain my feet and ankles. Kevin is getting ready to give me another shot tonight. I will have labs tomorrow so I am eager to see how they are holding.
Thank you for your faithfulness in prayer for my family and me.
My doctor said today that I am taking twice the IV dose that I received in June of this drug. Edema ~ swelling~ can be caused by this medication so that might explain my feet and ankles. Kevin is getting ready to give me another shot tonight. I will have labs tomorrow so I am eager to see how they are holding.
Thank you for your faithfulness in prayer for my family and me.
Saturday, September 11, 2010
Happy Birthday & Hospital
Today Grammy was blessed to attend Lil Man's second birthday party. His three tier Spongebob cake and scads of Spongebob cupcakes beckoned baby chubby fingers to swipe and lick frosting. Aunt Steph donned a Spongebob costume which was a hit but a bit intimidating to Lil Man. Family and friends lavished him with love and too many gifts to count.
Tired from too much birthday partying, Grammy and Grampy had dinner with our good friends and then I headed to the hospital for my IV treatment. As I type this blog post, I wait for pharmacy to prepare my IV. By the time I finish, it will be late and I will be ready to crawl into bed.
My first shipment of milk arrived this morning and I am thawing it. I pray its immune benefits will eliminate all infections that are harboring in my body. Pray I can overcome the mental blocks and be able to drink it. I long to be infection free as I was in 2009 when I drank milk. You know the slogan....."Milk does a body good!"
Friday, September 10, 2010
Update & Request for Prayer: September 10, 2010
I am at the Cancer Center and I am being desensitized to the IV antifungal, Micafungin. So far so good with that process. Fever and cough are still present. Hemoglobin declined further to 9 today. We are awaiting the differential - my oncologist wants to keep my ANC (Absolute Neutrophil Count) over 2000 while I fight this infection, so I anticipate requiring a Neupogen injection today.
Given that I have a pulmonary fungal infection which can be very serious when immune compromised, we have decided to go ahead and order the milk and it will be overnighted to me and it should arrive in the morning. Insurance approval process is still underway. My Mom called last night and said that she and Dad wanted to purchase a week's supply for me as I await insurance approval for the milk. One wouldn't think at age 46, your Mom and Dad would still be trying to obtain milk for you! :-) Goo Goo Ga Ga I am reverting to my infancy! :-)
After haggling with the hospital (since I have to receive weekend treatments there), they agreed to my coming at 6 PM tomorrow evening so I won't miss Lil Man's birthday party. Priorities, you know?
Fortunately, God's hand guided the hands of my nurse today and she hit a vein on the FIRST try and it is in a location that we can try to leave it in place for the two weekend treatments! That is a BIG praise. Just say NO to PICC lines!
Thanks for your continued prayers.
Given that I have a pulmonary fungal infection which can be very serious when immune compromised, we have decided to go ahead and order the milk and it will be overnighted to me and it should arrive in the morning. Insurance approval process is still underway. My Mom called last night and said that she and Dad wanted to purchase a week's supply for me as I await insurance approval for the milk. One wouldn't think at age 46, your Mom and Dad would still be trying to obtain milk for you! :-) Goo Goo Ga Ga I am reverting to my infancy! :-)
After haggling with the hospital (since I have to receive weekend treatments there), they agreed to my coming at 6 PM tomorrow evening so I won't miss Lil Man's birthday party. Priorities, you know?
Fortunately, God's hand guided the hands of my nurse today and she hit a vein on the FIRST try and it is in a location that we can try to leave it in place for the two weekend treatments! That is a BIG praise. Just say NO to PICC lines!
Thanks for your continued prayers.
Thursday, September 9, 2010
Update & Urgent Request for Prayer: September 9, 2010
This afternoon I learned that I have another pulmonary (lung) fungal infection. The culture is growing out and has not yet been identified. It has been sent to the University of Texas to be identified and to learn to which drugs it will respond. Fevers and cough continue.
I contacted my Infectious Disease Doctor in Indianapolis. He said that I cannot be afforded the luxury of waiting for the drug sensitivities before beginning treatment. He said that I have "prime" conditions for the lung fungal infection to become a systemic (throughout my body) fungal infection. Mainly, all of the antibiotics I am taking combined with my poor immune infection equals a prime environment for systemic infections.
Tomorrow, I will begin daily IV antifungals for a minimum of two weeks. I am devastated. I have fought infections all summer and am so very weak. The daily travel to and from the cancer center for these treatments during the week (and back to the hospital on the weekends) really takes its toll on me.
Please pray .......
-That the infection will respond quickly to the IV drugs and that it will not spread.
-That I will not react to the medication and that I will have no serious side effects from it.
-That I will not become neutropenic while taking this drug.
-That I will be strengthened with God's strength for this new challenge.
-That my immune system will somehow, someway be rebuilt and restored.
We are awaiting the insurance review on the milk. If that does not happen quickly, I have inquired about the possibility of purchasing milk directly during these difficult days. Please pray about this need, as well.
I contacted my Infectious Disease Doctor in Indianapolis. He said that I cannot be afforded the luxury of waiting for the drug sensitivities before beginning treatment. He said that I have "prime" conditions for the lung fungal infection to become a systemic (throughout my body) fungal infection. Mainly, all of the antibiotics I am taking combined with my poor immune infection equals a prime environment for systemic infections.
Tomorrow, I will begin daily IV antifungals for a minimum of two weeks. I am devastated. I have fought infections all summer and am so very weak. The daily travel to and from the cancer center for these treatments during the week (and back to the hospital on the weekends) really takes its toll on me.
Please pray .......
-That the infection will respond quickly to the IV drugs and that it will not spread.
-That I will not react to the medication and that I will have no serious side effects from it.
-That I will not become neutropenic while taking this drug.
-That I will be strengthened with God's strength for this new challenge.
-That my immune system will somehow, someway be rebuilt and restored.
We are awaiting the insurance review on the milk. If that does not happen quickly, I have inquired about the possibility of purchasing milk directly during these difficult days. Please pray about this need, as well.
Wednesday, September 8, 2010
Happy Birthday, Child of My Child
This week we celebrate Lil Man's birthday - the child of my child - my precious grandson. I do not know the name of the poet who penned this poem, however, I embraced the words.
Child of My Child
Oh, child of my child, Hope of my hopes,
Dream of my dreams.
You are born of my past en route to your future.
Even though you will learn what I only imagined,
Experience what I only supposed,
Grow wise in things I only guessed,
Let me share this space and place with you.
Only then can I trust the future I will not live to see.
For no matter what riches I amass in the world,
You, the child of my child,
Are my truest legacy.
Child of My Child
Oh, child of my child, Hope of my hopes,
Dream of my dreams.
You are born of my past en route to your future.
Even though you will learn what I only imagined,
Experience what I only supposed,
Grow wise in things I only guessed,
Let me share this space and place with you.
Only then can I trust the future I will not live to see.
For no matter what riches I amass in the world,
You, the child of my child,
Are my truest legacy.
Sunday, September 5, 2010
The Week in Review
Thankfully Tina released a brief request to prayer to our online prayer group this week. I have had a week full of challenges and have been quite ill. I have seen some small breakthroughs this weekend, so I wanted to update my blog and thank everyone who has been praying. It was one of those weeks that I knew things were turning very seriously in the wrong direction for me.
The week in review.....
Sunday, August 29, 2010
I awoke very ill and knew that something was not right. After all of these years battling cancer, I know my body, inside and out. I recognize signs and symptoms that are warning signs that action is required. I could not even get out of bed and for me, nothing waves a red flag like that. Even on my very bad days, I set goals for myself and push to achieve them.
Monday, August 30, 2010
I continued to have a day of health challenges. My doctor and I played telephone tag all day and tried to make decisions that would benefit me. She had me go to the hospital Monday evening for a chest x-ray and the usual work-up for cancer patients who are immune compromised: blood cultures, urine cultures, CBC, CMP, CMV screening, and other tests that provide a portrait of what organism is causing the infection and how best to respond.
My doctor also thought it would be prudent while we awaited results to add the powerful antibiotic Tobramycin into my sinuses. So I began the first dose at the hospital and returned home.
Most alarming to us was the knowledge that my white count had almost tripled from 50,000 when I left ICU on August 20th to 152,000 on Monday (a normal WBC is 5000-10,000). We needed test results to reveal to us if an infection was causing this drastic increase or if the leukemia was reeling out of control.
Tuesday, August 31, 2010 and Wednesday, September 1, 2010
I continued to feel poorly - fevers, cough, and blood coming from my sinuses around the clock. I returned to the doctor on Wednesday and we were still awaiting culture results. We were suspicious that Pseudomonas could be causing these symptoms. This very serious infection nearly killed me in 2007 and I spent almost two weeks in ICU. We prayed fervently that this would not be identified as the culprit.
Thursday, September 2, 2010
Symptoms were worsening yet we didn't want to admit me to ICU and randomly select IV drugs to throw at this yet undiagnosed infection. My doctor and I made the decision that I should undergo a sinus endoscope to collect samples directly from the sinus cavities. I was prepared to leave for that and then learned that blood drawn earlier on Thursday revealed my platelets had dropped to 60,000 (normal 150,000-400,000). I was not certain if the ENT would proceed with the procedure due to risks of bleeding but we decided benefits outweighed risks. I have had this procedure many times and compared to other procedures, it is not too difficult and God protected me from bleeding concerns.
The two tests we had performed earlier in the week to determine if the leukemia was causing the drastic white blood cell increases returned and they did not indicate that the leukemia was raging. Praise God.
Friday, September 3, 2010
I returned to the doctor very early on Friday. The sinus scope samples were already growing out gram negative rods - some of the most dangerous infectious organisms to immune compromised people like myself. Pseudomonas is a gram negative rod. More concerning, my hemoglobin dropped by two points and my platelets fell into the 50,000 range. Obviously, the infection was serious and was impacting my very limited bone marrow function. We were seeing several areas under my skin where capillaries were rupturing and bleeding under my skin. We made the joint decision that we could wait no longer on the identification of the bacteria and would add yet another antibiotic.
I returned to the cancer center to be desensitized to another antibiotic. Thankfully, their hectic schedule permitted them to add my all day desensitization. I knew this was the first desensitization protocol these pharmacists would oversee since my oncologist had just moved the cancer center to another hospital.. My nurse told me that my main pharmacist from the other hospital [where I go to ICU] had recently transferred. I guess all of the hospital pharmacists were discussing how best to do this and Mark (the pharmacist who had cared for me for years) spoke up and said he had participated in dozens of desensitizations with me and he was placed in charge. I am thankful he will be at the new cancer center to help with all of my drug concerns.
The desensitization went well. Usually someone picks me up at the cancer center but I had my car with me on Friday since I didn't know all of this was going to transpire. Kevin met me there at four and I told him I thought I could make the 30 minute drive home alone. We left about 5 in heavy traffic and was about half way home when my arm felt odd. I looked down and blood was pouring down my arm. I pulled off and Kevin stopped behind me. The IV site hadn't clotted well due to my low platelets. Kevin grabbed a clean Pamper [thanks Lil Man] and applied pressure. The absorbency of the diaper worked great to prevent a further mess. My clothes, my light grey leather seat, everything had blood on it. I drove the rest of the way home with one hand steering and one hand keeping pressure on my arm. Good thing my guardian angel was riding along with me today! Even today I have a nasty black and blue bruise that covers a third of my lower left arm.
Yesterday I felt a bit better overall. Our daughter Stephanie took me back to the hospital yesterday evening for more lab work. Praise God the platelets and neutrophils were improved! That tells me the new antibiotic is working. And today the blood from my sinuses has lessened greatly. Hopefully, I am on the road to recovery yet again. Can't keep a good woman down when God is on her side!
Some of you might recall my breast milk experiment of June 2009 ~ mid August 2009. Those almost 3 months were the last time I was infection free. Also we saw my CD4 T-Cell count more than double during those three months - very important when fighting infections.
This week my doctor pondered what to do for me and suggested I locate another source of milk and give it another try to see if I can halt this year long cycle of infections and replicate last year's promising results. We have located a well run milk bank through Clarian Health with stringent testing of milk to be certain it is free from viruses, etc. Our insurance is actually sending the request for review to seek reimbursement for the milk since my doctor is actually writing a prescription for it. This will cost over $600 per month, but that is much less expensive than even one of my antibiotics or a trip to ICU. Please pray that God will make all of the details fall into place if this is in His plan for me and that after a year's battle with infection, that I will be able to report that I am INFECTION FREE.
I appreciate your prayers - even when I am silent and too ill to post an update or request for prayer. Lil Man's second birthday is this week, so I must continue to improve for that BIG DAY!
I praise God for the peace and joy and strength He is raising up in me despite the challenges around me. I will trust Him for that abundant life He has promised to us. I refuse to allow living wills or the prospect that no treatment remains for me or the suffering of my body to rob me of the joy of the tomorrows that I have remaining.
He is my Everything.
The week in review.....
Sunday, August 29, 2010
I awoke very ill and knew that something was not right. After all of these years battling cancer, I know my body, inside and out. I recognize signs and symptoms that are warning signs that action is required. I could not even get out of bed and for me, nothing waves a red flag like that. Even on my very bad days, I set goals for myself and push to achieve them.
Monday, August 30, 2010
I continued to have a day of health challenges. My doctor and I played telephone tag all day and tried to make decisions that would benefit me. She had me go to the hospital Monday evening for a chest x-ray and the usual work-up for cancer patients who are immune compromised: blood cultures, urine cultures, CBC, CMP, CMV screening, and other tests that provide a portrait of what organism is causing the infection and how best to respond.
My doctor also thought it would be prudent while we awaited results to add the powerful antibiotic Tobramycin into my sinuses. So I began the first dose at the hospital and returned home.
Most alarming to us was the knowledge that my white count had almost tripled from 50,000 when I left ICU on August 20th to 152,000 on Monday (a normal WBC is 5000-10,000). We needed test results to reveal to us if an infection was causing this drastic increase or if the leukemia was reeling out of control.
Tuesday, August 31, 2010 and Wednesday, September 1, 2010
I continued to feel poorly - fevers, cough, and blood coming from my sinuses around the clock. I returned to the doctor on Wednesday and we were still awaiting culture results. We were suspicious that Pseudomonas could be causing these symptoms. This very serious infection nearly killed me in 2007 and I spent almost two weeks in ICU. We prayed fervently that this would not be identified as the culprit.
Thursday, September 2, 2010
Symptoms were worsening yet we didn't want to admit me to ICU and randomly select IV drugs to throw at this yet undiagnosed infection. My doctor and I made the decision that I should undergo a sinus endoscope to collect samples directly from the sinus cavities. I was prepared to leave for that and then learned that blood drawn earlier on Thursday revealed my platelets had dropped to 60,000 (normal 150,000-400,000). I was not certain if the ENT would proceed with the procedure due to risks of bleeding but we decided benefits outweighed risks. I have had this procedure many times and compared to other procedures, it is not too difficult and God protected me from bleeding concerns.
The two tests we had performed earlier in the week to determine if the leukemia was causing the drastic white blood cell increases returned and they did not indicate that the leukemia was raging. Praise God.
Friday, September 3, 2010
I returned to the doctor very early on Friday. The sinus scope samples were already growing out gram negative rods - some of the most dangerous infectious organisms to immune compromised people like myself. Pseudomonas is a gram negative rod. More concerning, my hemoglobin dropped by two points and my platelets fell into the 50,000 range. Obviously, the infection was serious and was impacting my very limited bone marrow function. We were seeing several areas under my skin where capillaries were rupturing and bleeding under my skin. We made the joint decision that we could wait no longer on the identification of the bacteria and would add yet another antibiotic.
I returned to the cancer center to be desensitized to another antibiotic. Thankfully, their hectic schedule permitted them to add my all day desensitization. I knew this was the first desensitization protocol these pharmacists would oversee since my oncologist had just moved the cancer center to another hospital.. My nurse told me that my main pharmacist from the other hospital [where I go to ICU] had recently transferred. I guess all of the hospital pharmacists were discussing how best to do this and Mark (the pharmacist who had cared for me for years) spoke up and said he had participated in dozens of desensitizations with me and he was placed in charge. I am thankful he will be at the new cancer center to help with all of my drug concerns.
The desensitization went well. Usually someone picks me up at the cancer center but I had my car with me on Friday since I didn't know all of this was going to transpire. Kevin met me there at four and I told him I thought I could make the 30 minute drive home alone. We left about 5 in heavy traffic and was about half way home when my arm felt odd. I looked down and blood was pouring down my arm. I pulled off and Kevin stopped behind me. The IV site hadn't clotted well due to my low platelets. Kevin grabbed a clean Pamper [thanks Lil Man] and applied pressure. The absorbency of the diaper worked great to prevent a further mess. My clothes, my light grey leather seat, everything had blood on it. I drove the rest of the way home with one hand steering and one hand keeping pressure on my arm. Good thing my guardian angel was riding along with me today! Even today I have a nasty black and blue bruise that covers a third of my lower left arm.
Yesterday I felt a bit better overall. Our daughter Stephanie took me back to the hospital yesterday evening for more lab work. Praise God the platelets and neutrophils were improved! That tells me the new antibiotic is working. And today the blood from my sinuses has lessened greatly. Hopefully, I am on the road to recovery yet again. Can't keep a good woman down when God is on her side!
Some of you might recall my breast milk experiment of June 2009 ~ mid August 2009. Those almost 3 months were the last time I was infection free. Also we saw my CD4 T-Cell count more than double during those three months - very important when fighting infections.
This week my doctor pondered what to do for me and suggested I locate another source of milk and give it another try to see if I can halt this year long cycle of infections and replicate last year's promising results. We have located a well run milk bank through Clarian Health with stringent testing of milk to be certain it is free from viruses, etc. Our insurance is actually sending the request for review to seek reimbursement for the milk since my doctor is actually writing a prescription for it. This will cost over $600 per month, but that is much less expensive than even one of my antibiotics or a trip to ICU. Please pray that God will make all of the details fall into place if this is in His plan for me and that after a year's battle with infection, that I will be able to report that I am INFECTION FREE.
I appreciate your prayers - even when I am silent and too ill to post an update or request for prayer. Lil Man's second birthday is this week, so I must continue to improve for that BIG DAY!
I praise God for the peace and joy and strength He is raising up in me despite the challenges around me. I will trust Him for that abundant life He has promised to us. I refuse to allow living wills or the prospect that no treatment remains for me or the suffering of my body to rob me of the joy of the tomorrows that I have remaining.
He is my Everything.
Sunday, August 22, 2010
Why We Should Pray Without Ceasing
"Not only does sin hinder prayer; prayer hinders sin.
The two are always opposed.
The more careless we are about sin, the less we will pray.
The more we pray, the less careless we will be about sin.
Both sin and prayer are powerful forces.
Which one is moving you?"
- Dr. Alvin Vander Griend
- Dr. Alvin Vander Griend
Saturday, August 21, 2010
An Update & Request for Prayer: August 21, 2010
By the grace of God, He pulled me out of the ICU and planted me firmly in my own bed late last night! I was able to wean off of oxygen yesterday and my wise physician knows that I am safer at home - it separates me from exposure to more infections in the hospital; I sleep and rest better at home (much needed for my recovery); and the main IV drug to treat the staph "happened" to have an oral version that is equally absorbable. I made the transition from IV to oral Zyvox and was sent on my way.
My cough has improved but is still present and my temperature has returned today. The IV steroids that I required this past week for adrenal support, again, made my sugar levels out of control, so I have been receiving insulin. We arrived home late last night and I knew I needed to check my sugar and in my drug haze, I could not locate my monitor. So our best friends came to the rescue and brought a glucose monitor and strips up at midnight to me. I was so exhausted. Kevin and our friends prayed for me and they said I fell asleep while they were praying for me.
We will have to monitor my blood counts closely for the next couple of weeks - this Zyvox drug has multiple warnings for its use with patients with marrow suppression (ME). It can induce lactic acidosis which can be very dangerous, so we will be alert for those signs. I have to follow a strict low tyramine (amino acid) diet with Zyvox also.
Just as I began to have a moment of celebration of being discharged, my trusted oncologist of many years called me. He has supposedly retired :-) but has checked in on me most of this week from Maryland - even calling Kevin at 5 AM on the morning I was admitted. I can always count on Dr. M to be forthright and honest with me - traits I appreciate in my physicians. Although sometimes the truth is a challenge to digest, I believe it is imperative that no one sugar coats what might be ahead for me. He encouraged me that my family doctor and I need to begin some dialogue about my being putting on a ventilator in the future - because he stated, "Stacie, it is not a matter of IF you will be on a ventilator, it will be a matter of WHEN you will be on a ventilator." I realize that I have miraculously survived two serious lung infections in ICU in two months - a fungal infection and a staph infection. Just as easily, either of these infections could have taken my life.
It is never easy to consider, ponder and discuss end of life strategies, but I am making efforts. I have been walking around with my files with my living will, will, medical power of attorney, funeral plans, etc. for the most of the summer. I will pull these files out and try to put into words some of the most daunting planning that I will ever be asked to complete. The work has been difficult and often brings tears. I will persevere and finish these tasks as I will not leave decisions such as these for those I most love to make.
Fortunately, my nurse yesterday was Lissa. She is a 40 year veteran of that ICU department and she has cared for me for over a decade. She had a frank, open discussion about end of life strategies with me and answered some questions on ventilators, etc. for me. I know that God allowed her to be with me yesterday when I was faced with those considerations.
My NIH oncologist also told me that the splenic irradiation has been tabled for now. I knew in my heart that to begin the irradiation with infections present would be suicidal. I had hopes that the irradiation would offer some relief for me and possibly reduce the tumor load. However, I cannot risk killing myself to achieve those goals. Once again, the leukemia roller coaster is racing up and down so many hills, making swift turns from one concern to the next, and I am barely holding on for dear life.
Monday, I will return to the Cancer Center at 8 AM for my all day IVIG infusion. It will be difficult to do right now with feeling so poorly, but my doctor feels it is mandatory to have that immune support while I fight staph in my lungs and I agree.
Yesterday while I was at the hospital, my Dad and Mom came with the traveling version of a Cancer-versary party for me - a decorated tree with "14" decorations on it (since it was my 14th Cancer-versary this week). They had a plate of cupcakes and a beautiful praying hands necklace and journal for me. Thanks, Mom and Dad! I couldn't eat the cupcakes with my sugar running high from the steroids, but my nurses enjoyed them.
Your prayers are treasured.
My cough has improved but is still present and my temperature has returned today. The IV steroids that I required this past week for adrenal support, again, made my sugar levels out of control, so I have been receiving insulin. We arrived home late last night and I knew I needed to check my sugar and in my drug haze, I could not locate my monitor. So our best friends came to the rescue and brought a glucose monitor and strips up at midnight to me. I was so exhausted. Kevin and our friends prayed for me and they said I fell asleep while they were praying for me.
We will have to monitor my blood counts closely for the next couple of weeks - this Zyvox drug has multiple warnings for its use with patients with marrow suppression (ME). It can induce lactic acidosis which can be very dangerous, so we will be alert for those signs. I have to follow a strict low tyramine (amino acid) diet with Zyvox also.
Just as I began to have a moment of celebration of being discharged, my trusted oncologist of many years called me. He has supposedly retired :-) but has checked in on me most of this week from Maryland - even calling Kevin at 5 AM on the morning I was admitted. I can always count on Dr. M to be forthright and honest with me - traits I appreciate in my physicians. Although sometimes the truth is a challenge to digest, I believe it is imperative that no one sugar coats what might be ahead for me. He encouraged me that my family doctor and I need to begin some dialogue about my being putting on a ventilator in the future - because he stated, "Stacie, it is not a matter of IF you will be on a ventilator, it will be a matter of WHEN you will be on a ventilator." I realize that I have miraculously survived two serious lung infections in ICU in two months - a fungal infection and a staph infection. Just as easily, either of these infections could have taken my life.
It is never easy to consider, ponder and discuss end of life strategies, but I am making efforts. I have been walking around with my files with my living will, will, medical power of attorney, funeral plans, etc. for the most of the summer. I will pull these files out and try to put into words some of the most daunting planning that I will ever be asked to complete. The work has been difficult and often brings tears. I will persevere and finish these tasks as I will not leave decisions such as these for those I most love to make.
Fortunately, my nurse yesterday was Lissa. She is a 40 year veteran of that ICU department and she has cared for me for over a decade. She had a frank, open discussion about end of life strategies with me and answered some questions on ventilators, etc. for me. I know that God allowed her to be with me yesterday when I was faced with those considerations.
My NIH oncologist also told me that the splenic irradiation has been tabled for now. I knew in my heart that to begin the irradiation with infections present would be suicidal. I had hopes that the irradiation would offer some relief for me and possibly reduce the tumor load. However, I cannot risk killing myself to achieve those goals. Once again, the leukemia roller coaster is racing up and down so many hills, making swift turns from one concern to the next, and I am barely holding on for dear life.
Monday, I will return to the Cancer Center at 8 AM for my all day IVIG infusion. It will be difficult to do right now with feeling so poorly, but my doctor feels it is mandatory to have that immune support while I fight staph in my lungs and I agree.
Yesterday while I was at the hospital, my Dad and Mom came with the traveling version of a Cancer-versary party for me - a decorated tree with "14" decorations on it (since it was my 14th Cancer-versary this week). They had a plate of cupcakes and a beautiful praying hands necklace and journal for me. Thanks, Mom and Dad! I couldn't eat the cupcakes with my sugar running high from the steroids, but my nurses enjoyed them.
Your prayers are treasured.
Thursday, August 19, 2010
5513 Days
5513 days. Fourteen years ago today, I was diagnosed with leukemia. In many ways it seems that I have endured this battle my entire life. I close my eyes tightly, focus, and my mind's instant replay cannot locate a memory of how it feels not to be sick or in pain.
That steamy August day will never be forgotten. I can envision myself preparing for the appointment and singing over and over the chorus Sanctuary:
Lord, prepare me
To be a sanctuary,
Pure and holy
Tried and true.
With thanksgiving,
I’ll be a
Living Sanctuary
For You.
Driving into the cancer center’s parking lot, those lyrics still replayed in my mind. To lift my feet to walk into the office felt like I had lead feet. The racing of my heart reached a crescendo as the doctor ever so callously handed me a sheet of paper.....highlighted in yellow were the life altering words: Diagnosis: Leukemia. The words, “NO! NO! NO!” resounded in my mind but could not locate the pathway to my lips.
On our 20 minute drive home, my husband and I had to quickly decide what we were going to say when we pulled into our driveway to face our three young daughters. I knew without hesitation that we must tell them the truth. John 8:32 instructs us: “…..and the truth will set you free.” I detest lying and I never lied to my daughters, I was not going to be a mother of deception and most importantly, I was assured that “All things work together for good for those who love the Lord and are called according to His purpose (Romans 8:28).” Even on this darkest day, hope and goodness would emerge.
God has answered that musical prayer I sang repeatedly that morning of my diagnosis. He prepared and continues to prepare me to be a LIVING SANCTUARY FOR HIM. He has given life days and years beyond what anyone predicted for me. Just this morning, my nurse asked me how I have the peace and hope that I do in the midst of such a medical prognosis of having “months to a year” to live. And I replied, “Because I know how wonderful my eternal destination will be!”
Would it have been easier not to have trudged this path? Most definitely.I have had thousands of blood draws and painful tests and procedures. I have traveled tens of thousands of miles in search of the world’s best doctors. I have nearly died multiple times from numerous infections and drug reactions. And I have read and researched thousands of pages of medical journals, textbooks, and studies.
Yet, if I had not walked down this dusty trail, I never would have known the depth of the love and relationship that I have with my Heavenly Father. I read this quote this morning, and it is quite applicable to my life passage:
"Perhaps one reason God delays His answers to our prayers is because
He knows we need to be with Him far more than we need
the things we ask of Him."
- Ben Patterson
God has answered uncountable prayers for me. A brief recap would include the multiple times He has reached down and grasped me from death’s claw. Also, He multiplied those 3 years I was told I would live when diagnosed into 14 years of life to watch our daughters grow, graduate, marry and to become a Grammy. He allowed me to mature and age from a 32 year old young mother to an almost 47 year old grandmother with a few grey hairs and tiny wrinkles. I would have applied moisturizer if I had known that death wasn’t going to knock at age 35!
God, the Potter, has taken the lump of clay known as Stacie and has molded and refined me through these trials. He knew trials such as these can devastate people without faith, however for His children, God knows that life’s fires refine us to be more like our Heavenly Father. Until I breathe my last breath, I pray I will grow to reflect my Savior more and more.
I am certain that this topsy-turvy voyage my family has sailed together has been life altering and challenging. I am also certain that nuggets of goodness have emerged. GOD will allow GOOD to emerge from tribulations when we remain obedient, faithful, hopeful, joyful and grounded in Him. Some of the golden life nuggets that I have witnessed from our family’s journey include …..
Our oldest daughter is a nurse (almost Nurse Practitioner) and her nursing skills are a reflection of all the exceptional nurses who have cared for me and are void of the nursing skills that lacked in compassion and competency. Her patients’ families often comment on the care that she extends to her patients’ families. For many long years, she was that young daughter who sat in the hospital with me. She understands the needs that families possess and the needs of her patients. She has battled a lifetime of congenital heart disease and I see her with the same passion for research of her condition and advocacy for the disease on even the national level as her Mom possesses.
Our second daughter (by only three minutes) has strength and determination and fortitude as she copes with her own health challenges as a Type 1 diabetic. She, too, researches her disease, locates reputable physicians, and engages every resource available to her. I hope that something I have implemented as a chronic disease patient has touched her own spirit. She has translated her own trials into her work with many other diabetic patients as a Registered Dietitian. Young, newly diagnosed diabetic patients have often been touched by our daughter’s own experiences. Recently she told me of a young girl who was brought by her mother for a consultation with our daughter. She, too, had been diagnosed as a Type I diabetic and was full of anger and frustration. Her body language told our daughter that she was angry to be in her office. After our daughter shared her own journey and the young girl could see a successful, beautiful diabetic living life fully, she softened. And when the consultation ended, she told our daughter, “You are the coolest dietitian I’ve ever met!” Another life changed.
God chose a different life path for our youngest daughter. As passionate as her twin sisters are about their medical careers, our youngest daughter cannot look at blood, despises all medical procedures and followed a career in marketing and advertising. She has gained a heart of compassion through our journey. She is touched by the homeless man on a bicycle with his homeless dogs and offers a drink or money. The young widowed father with small children stirs her spirit as she watches them lose their mother to cancer. She arranges a trip to an amusement park for them and pays for them to go. She is touched by the mother cat with baby kittens who arrive at her backdoor, cold and hungry. And as the mother of our Lil Man, I see her love, dedication, passion, and care of him to reflect the same mothering attributes I felt toward our three daughters.
And due to our perseverance and God’s mercy, I am now a Grammy. Just as I promised God that I would teach my children about Him, I promised God to teach Lil Man about Him. I am blessed beyond measure as I serve with a servant’s heart as our grandson’s Nanny and am able to teach him about the God Who is my everything. He isn’t even two yet, but these are some of the baby steps toward God he has made:
--He picks up his little Bible and says, “Bible”.
--We ask him to say prayers for Grammy and he folds his hands in prayer.
--I ask him who Jesus’ Daddy is and he replies, “God”!
--When asked where does God live and he points upward and says, “Sky”.
Our family is replete with conquerors. I am thankful for those who have traveled this journey with me – family and friends. Even though I celebrate my 14th Cancerversary in the ICU today, I am very, very blessed.
John 10:10
The thief (Leukemia) does not come except to steal, and to kill, and to destroy.
I (God) have come that they (Stacie and her family) may have life, and that they may have it more abundantly.
That steamy August day will never be forgotten. I can envision myself preparing for the appointment and singing over and over the chorus Sanctuary:
Lord, prepare me
To be a sanctuary,
Pure and holy
Tried and true.
With thanksgiving,
I’ll be a
Living Sanctuary
For You.
Driving into the cancer center’s parking lot, those lyrics still replayed in my mind. To lift my feet to walk into the office felt like I had lead feet. The racing of my heart reached a crescendo as the doctor ever so callously handed me a sheet of paper.....highlighted in yellow were the life altering words: Diagnosis: Leukemia. The words, “NO! NO! NO!” resounded in my mind but could not locate the pathway to my lips.
On our 20 minute drive home, my husband and I had to quickly decide what we were going to say when we pulled into our driveway to face our three young daughters. I knew without hesitation that we must tell them the truth. John 8:32 instructs us: “…..and the truth will set you free.” I detest lying and I never lied to my daughters, I was not going to be a mother of deception and most importantly, I was assured that “All things work together for good for those who love the Lord and are called according to His purpose (Romans 8:28).” Even on this darkest day, hope and goodness would emerge.
God has answered that musical prayer I sang repeatedly that morning of my diagnosis. He prepared and continues to prepare me to be a LIVING SANCTUARY FOR HIM. He has given life days and years beyond what anyone predicted for me. Just this morning, my nurse asked me how I have the peace and hope that I do in the midst of such a medical prognosis of having “months to a year” to live. And I replied, “Because I know how wonderful my eternal destination will be!”
Would it have been easier not to have trudged this path? Most definitely.I have had thousands of blood draws and painful tests and procedures. I have traveled tens of thousands of miles in search of the world’s best doctors. I have nearly died multiple times from numerous infections and drug reactions. And I have read and researched thousands of pages of medical journals, textbooks, and studies.
Yet, if I had not walked down this dusty trail, I never would have known the depth of the love and relationship that I have with my Heavenly Father. I read this quote this morning, and it is quite applicable to my life passage:
"Perhaps one reason God delays His answers to our prayers is because
He knows we need to be with Him far more than we need
the things we ask of Him."
- Ben Patterson
God has answered uncountable prayers for me. A brief recap would include the multiple times He has reached down and grasped me from death’s claw. Also, He multiplied those 3 years I was told I would live when diagnosed into 14 years of life to watch our daughters grow, graduate, marry and to become a Grammy. He allowed me to mature and age from a 32 year old young mother to an almost 47 year old grandmother with a few grey hairs and tiny wrinkles. I would have applied moisturizer if I had known that death wasn’t going to knock at age 35!
God, the Potter, has taken the lump of clay known as Stacie and has molded and refined me through these trials. He knew trials such as these can devastate people without faith, however for His children, God knows that life’s fires refine us to be more like our Heavenly Father. Until I breathe my last breath, I pray I will grow to reflect my Savior more and more.
I am certain that this topsy-turvy voyage my family has sailed together has been life altering and challenging. I am also certain that nuggets of goodness have emerged. GOD will allow GOOD to emerge from tribulations when we remain obedient, faithful, hopeful, joyful and grounded in Him. Some of the golden life nuggets that I have witnessed from our family’s journey include …..
Our oldest daughter is a nurse (almost Nurse Practitioner) and her nursing skills are a reflection of all the exceptional nurses who have cared for me and are void of the nursing skills that lacked in compassion and competency. Her patients’ families often comment on the care that she extends to her patients’ families. For many long years, she was that young daughter who sat in the hospital with me. She understands the needs that families possess and the needs of her patients. She has battled a lifetime of congenital heart disease and I see her with the same passion for research of her condition and advocacy for the disease on even the national level as her Mom possesses.
Our second daughter (by only three minutes) has strength and determination and fortitude as she copes with her own health challenges as a Type 1 diabetic. She, too, researches her disease, locates reputable physicians, and engages every resource available to her. I hope that something I have implemented as a chronic disease patient has touched her own spirit. She has translated her own trials into her work with many other diabetic patients as a Registered Dietitian. Young, newly diagnosed diabetic patients have often been touched by our daughter’s own experiences. Recently she told me of a young girl who was brought by her mother for a consultation with our daughter. She, too, had been diagnosed as a Type I diabetic and was full of anger and frustration. Her body language told our daughter that she was angry to be in her office. After our daughter shared her own journey and the young girl could see a successful, beautiful diabetic living life fully, she softened. And when the consultation ended, she told our daughter, “You are the coolest dietitian I’ve ever met!” Another life changed.
God chose a different life path for our youngest daughter. As passionate as her twin sisters are about their medical careers, our youngest daughter cannot look at blood, despises all medical procedures and followed a career in marketing and advertising. She has gained a heart of compassion through our journey. She is touched by the homeless man on a bicycle with his homeless dogs and offers a drink or money. The young widowed father with small children stirs her spirit as she watches them lose their mother to cancer. She arranges a trip to an amusement park for them and pays for them to go. She is touched by the mother cat with baby kittens who arrive at her backdoor, cold and hungry. And as the mother of our Lil Man, I see her love, dedication, passion, and care of him to reflect the same mothering attributes I felt toward our three daughters.
And due to our perseverance and God’s mercy, I am now a Grammy. Just as I promised God that I would teach my children about Him, I promised God to teach Lil Man about Him. I am blessed beyond measure as I serve with a servant’s heart as our grandson’s Nanny and am able to teach him about the God Who is my everything. He isn’t even two yet, but these are some of the baby steps toward God he has made:
--He picks up his little Bible and says, “Bible”.
--We ask him to say prayers for Grammy and he folds his hands in prayer.
--I ask him who Jesus’ Daddy is and he replies, “God”!
--When asked where does God live and he points upward and says, “Sky”.
Our family is replete with conquerors. I am thankful for those who have traveled this journey with me – family and friends. Even though I celebrate my 14th Cancerversary in the ICU today, I am very, very blessed.
John 10:10
The thief (Leukemia) does not come except to steal, and to kill, and to destroy.
I (God) have come that they (Stacie and her family) may have life, and that they may have it more abundantly.
Wednesday, August 18, 2010
Reflections on Forgiveness
"It is the truth that those who forgive most shall be most forgiven."
- Josiah Bailey
"Let all bitterness, wrath, and anger, and clamour, and evil speaking, be put away from you, with all malice; and ye be kind to one another, tenderhearted, forgiving one another, even as God for Christ's sake has forgiven you."
-Ephesians 4:31-32
"Those who hate you don't win unless you hate them, and then you destroy yourself."
-Richard Nixon
"I firmly believe that a great many prayers are not answered because we are not wiling to forgive someone."
-D.L.Moody
- Josiah Bailey
"Let all bitterness, wrath, and anger, and clamour, and evil speaking, be put away from you, with all malice; and ye be kind to one another, tenderhearted, forgiving one another, even as God for Christ's sake has forgiven you."
-Ephesians 4:31-32
"Those who hate you don't win unless you hate them, and then you destroy yourself."
-Richard Nixon
"I firmly believe that a great many prayers are not answered because we are not wiling to forgive someone."
-D.L.Moody
Update & Request for Prayer: August 18, 2010
I have been quite ill and have not updated my blog as I should. Due to my prayer recruiters, Tina and Dawn, I know several of you have learned of this latest bout of struggles. Thank you for praying.
THURSDAY
Ear pain resulted in ear infection. Biaxin started.
SATURDAY
Felt worse. Fevers increased and cough was productive. I suspect the return of the fungal infection when I was hospitalized in June.
SUNDAY
Cough, fever, chest congestion and my oxygen levels worsened overnight. I went to the hospital and they performed a chest x-ray, blood cultures and other labs. My doctor was out of state and she is the General of my medical team. I was determined to not be admitted with her away. I began having trouble breathing and shortness of breath.
Later Sunday evening, my doctor called much to our dismay, a staph infection was found growing in my lungs. She consulted my Infectious Disease Doctor and we returned to the hospital to begin a third antibiotic. I did not have a drug reaction and we returned home around midnight.
MONDAY
I saw my doctor and the lab managed not to provide the staph ID and sensitivities by 5 PM. It was a difficult day - I spent over 2 hours at the doctor trying to sort everything out. I had numerous calls with the insurance company and specialists.
My pulse was up to 137 on Monday evening with continued fevers and the ID Dr. was concerned about that - I was told if my pulse went higher or did not begin to decrease and if symptoms continued to worsen, they would admit me.
At five minutes before five, the insurance came through with approval for oxygen for home use.
I went to bed not feeling well and awoke with chills at 1 AM (early Tuesday morning). Chills and my related symptoms could indicate septicemia (infection in bloodstream). Kevin rushed me to the hospital at 2 AM and I was again admitted to ICU.
By early afternoon yesterday, I had been safely desensitized to IV Zyvox for the staph in my lungs and IV Tobramycin to add coverage in case my worsening is related to septicemia. The sensitivities are still not here so they could change both these drugs. Oxygen support was such a relief. I was struggling to breathe and talk, so I knew I was in trouble.
WEDNESDAY
My doctors have been in this morning. My counts are already diving due to marrow suppression worsened by infection and these powerful drugs. The Zyvox (IV antibiotic for Staph) had a warning about marrow suppressed people and Tobramycin always reduces my counts. Once again, we must weigh risks versus benefits. My WBC was 60,700 yesterday and is 38,900 today (and that decline is with IV steroids that always INCREASE my WBC). My ANC required a Neupogen injection at noon and I will continue to receive it since we expect further WBC declines. I was hoping to receive IVIG treatment tomorrow but that doesn't appear to be happening. Zyvox is infusing as I type. Once this IV is in, the Tobramycin will be started.
My Hemoglobin has fallen by 2 points with just one day of these drugs. My NIH oncologist forewarned me that blood transfusion support might be required. Infection always suppresses my marrow somewhat, so hemoglobin prayers are needed. My platelets have declined as well.
They took a urine sample overnight for culturing - not symptomatic but with ongoing fevers we cannot leave a stone unturned. Also, another sputum sample was taken for a silver stain to look for PCP again - I imagine that will be a send out lab. The lab has failed to identify the staph infection or provide drug sensitivities. Their shoddy performance is alarming to me when these results dictate life saving decisions for me.
Please pray:
-For the infection(s) to be identified and drug sensitivities to become quickly available
-For me not to require blood transfusions
-For me not to be dependent upon oxygen
-For additional infections or hospital acquired infections NOT to develop
-For me not to have drug reactions
-For God to direct all decisions made on my behalf and staffing chosen to help me
-For strength and courage for my family and me
That is the update for today. Continued prayers treasured.
THURSDAY
Ear pain resulted in ear infection. Biaxin started.
SATURDAY
Felt worse. Fevers increased and cough was productive. I suspect the return of the fungal infection when I was hospitalized in June.
SUNDAY
Cough, fever, chest congestion and my oxygen levels worsened overnight. I went to the hospital and they performed a chest x-ray, blood cultures and other labs. My doctor was out of state and she is the General of my medical team. I was determined to not be admitted with her away. I began having trouble breathing and shortness of breath.
Later Sunday evening, my doctor called much to our dismay, a staph infection was found growing in my lungs. She consulted my Infectious Disease Doctor and we returned to the hospital to begin a third antibiotic. I did not have a drug reaction and we returned home around midnight.
MONDAY
I saw my doctor and the lab managed not to provide the staph ID and sensitivities by 5 PM. It was a difficult day - I spent over 2 hours at the doctor trying to sort everything out. I had numerous calls with the insurance company and specialists.
My pulse was up to 137 on Monday evening with continued fevers and the ID Dr. was concerned about that - I was told if my pulse went higher or did not begin to decrease and if symptoms continued to worsen, they would admit me.
At five minutes before five, the insurance came through with approval for oxygen for home use.
I went to bed not feeling well and awoke with chills at 1 AM (early Tuesday morning). Chills and my related symptoms could indicate septicemia (infection in bloodstream). Kevin rushed me to the hospital at 2 AM and I was again admitted to ICU.
By early afternoon yesterday, I had been safely desensitized to IV Zyvox for the staph in my lungs and IV Tobramycin to add coverage in case my worsening is related to septicemia. The sensitivities are still not here so they could change both these drugs. Oxygen support was such a relief. I was struggling to breathe and talk, so I knew I was in trouble.
WEDNESDAY
My doctors have been in this morning. My counts are already diving due to marrow suppression worsened by infection and these powerful drugs. The Zyvox (IV antibiotic for Staph) had a warning about marrow suppressed people and Tobramycin always reduces my counts. Once again, we must weigh risks versus benefits. My WBC was 60,700 yesterday and is 38,900 today (and that decline is with IV steroids that always INCREASE my WBC). My ANC required a Neupogen injection at noon and I will continue to receive it since we expect further WBC declines. I was hoping to receive IVIG treatment tomorrow but that doesn't appear to be happening. Zyvox is infusing as I type. Once this IV is in, the Tobramycin will be started.
My Hemoglobin has fallen by 2 points with just one day of these drugs. My NIH oncologist forewarned me that blood transfusion support might be required. Infection always suppresses my marrow somewhat, so hemoglobin prayers are needed. My platelets have declined as well.
They took a urine sample overnight for culturing - not symptomatic but with ongoing fevers we cannot leave a stone unturned. Also, another sputum sample was taken for a silver stain to look for PCP again - I imagine that will be a send out lab. The lab has failed to identify the staph infection or provide drug sensitivities. Their shoddy performance is alarming to me when these results dictate life saving decisions for me.
Please pray:
-For the infection(s) to be identified and drug sensitivities to become quickly available
-For me not to require blood transfusions
-For me not to be dependent upon oxygen
-For additional infections or hospital acquired infections NOT to develop
-For me not to have drug reactions
-For God to direct all decisions made on my behalf and staffing chosen to help me
-For strength and courage for my family and me
That is the update for today. Continued prayers treasured.
Saturday, August 14, 2010
Accolades
This has been a summer of accolades and recognitions for me. I have joked that usually people begin receiving such recognitions when they are about dead or are dead. I have never been focused on worldly recognition. Rather, like the Nicole Nordeman "Legacy" lyrics states: "I want to leave an offering, a child of mercy and grace who blessed Your name unapologetically. And leave that kind of legacy."
Most importantly, I want to be remembered for my steadfast faith in God Above throughout a life punctuated with much pain and many problems. I want Him to be recognized and glorified through all that I do.
Some of you might recall that I was named the "Cancer Survivor of the Year" in June. Kevin and I appeared in the national Coping with Cancer magazine (July issue) in conjunction with their Survivor Day coverage.
The nonprofit I previously directed featured a tribute to me on the front page of thier newsletter last month. And the other nonprofit where I served as Program Director has named an annual award after me that will recognize outstanding servants of the ministry.
Lastly, I submitted some of my photos to the new cancer center. They wanted to use patient photography as art in the new center. Three of my photographs were selected. The private room where I receive all of my treatments is the "Stacie Room" with my photograph on the wall and Stacie usually residing in the chemo chair!
I am thankful for the gifts and talents that God alone has given to me. I would be nothing apart from Him.
"Legacy" lyrics:
I don't mind if you've got something nice to say about me
And I enjoy an accolade like the rest
You could take my picture and hang it in a gallery
Of all who's who and so-n-so's that used to be the best
At such'n'such ... it wouldn't matter much
I won't lie, it feels alright to see your name in lights
We all need an 'Atta boy' or 'Atta girl'
But in the end I'd like to hang my hat on more besides
The temporary trappings of this world
I want to leave a legacy
How will they remember me?
Did I choose to love?
Did I point to You enough To make a mark on things?
I want to leave an offering
A child of mercy and grace who blessed your name unapologetically
And leave that kind of legacy
I don't have to look too far or too long awhile
To make a lengthy list of all that I enjoy
It's an accumulating trinket and a treasure pile
Where moth and rust, thieves and such will soon enough destroy
Not well traveled, not well read, not well-to-do or well bred
Just want to hear instead, "Well Done" good and faithful one...
Most importantly, I want to be remembered for my steadfast faith in God Above throughout a life punctuated with much pain and many problems. I want Him to be recognized and glorified through all that I do.
Some of you might recall that I was named the "Cancer Survivor of the Year" in June. Kevin and I appeared in the national Coping with Cancer magazine (July issue) in conjunction with their Survivor Day coverage.
The nonprofit I previously directed featured a tribute to me on the front page of thier newsletter last month. And the other nonprofit where I served as Program Director has named an annual award after me that will recognize outstanding servants of the ministry.
Lastly, I submitted some of my photos to the new cancer center. They wanted to use patient photography as art in the new center. Three of my photographs were selected. The private room where I receive all of my treatments is the "Stacie Room" with my photograph on the wall and Stacie usually residing in the chemo chair!
I am thankful for the gifts and talents that God alone has given to me. I would be nothing apart from Him.
"Legacy" lyrics:
I don't mind if you've got something nice to say about me
And I enjoy an accolade like the rest
You could take my picture and hang it in a gallery
Of all who's who and so-n-so's that used to be the best
At such'n'such ... it wouldn't matter much
I won't lie, it feels alright to see your name in lights
We all need an 'Atta boy' or 'Atta girl'
But in the end I'd like to hang my hat on more besides
The temporary trappings of this world
I want to leave a legacy
How will they remember me?
Did I choose to love?
Did I point to You enough To make a mark on things?
I want to leave an offering
A child of mercy and grace who blessed your name unapologetically
And leave that kind of legacy
I don't have to look too far or too long awhile
To make a lengthy list of all that I enjoy
It's an accumulating trinket and a treasure pile
Where moth and rust, thieves and such will soon enough destroy
Not well traveled, not well read, not well-to-do or well bred
Just want to hear instead, "Well Done" good and faithful one...
An Update & Request for Prayer: August 14, 2010
I continue to run fevers and have been neutropenic this past week. I have received three Neupogen injections and they have given my neutrophils a boost. It always concerning to run fevers in the presence of neutropenia. Please pray specifically today for God to tend to any infection that might be undiscovered.
The cough continues and we are still awaiting the fungal culture results from my bronchoscopy on June 24th. Can you believe that?
My spleen continues to grow and grow and grow. It causes a great deal of discomfort and sleeping is nearly impossible.
I continue to research and ponder if/what treatment I should consider. I was leaning toward the metronomic chemotherapy (reduced doses infused 24 hours a day), however, I now believe that splenic irradiation might be more survivable. Two of my beloved and trusted oncologists have been advising me from afar about this possible option. I located a German trial using splenic irradiation with leukemia patients. I did not realize all of the biological possibilities that radiation might induce. And I am talking favorable possibilities. In this study, 22-38 percent of the patients achieved remission. That might sound like poor odds to you, but they are amazing odds for an end stage leukemia patient.
I will continue to pray for God to make the path I am to pursue crystal clear. I anticipate if I decide to treat, that we will move toward treatment by September.
The cough continues and we are still awaiting the fungal culture results from my bronchoscopy on June 24th. Can you believe that?
My spleen continues to grow and grow and grow. It causes a great deal of discomfort and sleeping is nearly impossible.
I continue to research and ponder if/what treatment I should consider. I was leaning toward the metronomic chemotherapy (reduced doses infused 24 hours a day), however, I now believe that splenic irradiation might be more survivable. Two of my beloved and trusted oncologists have been advising me from afar about this possible option. I located a German trial using splenic irradiation with leukemia patients. I did not realize all of the biological possibilities that radiation might induce. And I am talking favorable possibilities. In this study, 22-38 percent of the patients achieved remission. That might sound like poor odds to you, but they are amazing odds for an end stage leukemia patient.
I will continue to pray for God to make the path I am to pursue crystal clear. I anticipate if I decide to treat, that we will move toward treatment by September.
Temporary
"For we know that if our earthly house, this tent, is destroyed, we have a building from God, a house not made with hands, eternal in the heavens. For in this we groan, earnestly desiring to be clothed with our habitation which is from heaven, if indeed, having been clothed, we shall not be found naked. For we who are in this tent groan, being burdened, not because we want to be unclothed, but further clothed, that mortality may be swallowed up by life. Now He who has prepared us for this very thing is God, who also has given us the Spirit as a guarantee. So we are always confident, knowing that while we are at home in the body we are absent from the Lord. For we walk by faith, not by sight. We are confident, yes, well pleased rather to be absent from the body and to be present with the Lord" (2 Corinthians 5:1-8).
As I watch myself and so many Christians struggle against overwhelming trials and tribulations, I remind myself that we struggle on earth because this is not our home. We are lost foreigners with our true citizenship in Heaven ("For our citizenship is in heaven, from which we also eagerly wait for the Savior, the Lord Jesus Christ (Philippians 3:20). 2 Corinthians 5 presents a comparison between the temporary "tents" we reside in on earth and the lure of our eternal Home.
If asked today whether we would prefer living in a tent or a building, how would we reply? There are few, including myself, who would long to reside in a tent. Tents are temporary, they leak and break, and they are easily moved. Tents are not known for being comfortable and permanent. Conversely, buildings are permanent, not easily shaken and they offer the comforts of home that many of us experience. Paul uses this passage of Scripture to compare the body to our permanent homes in Heaven. There just is no comparison, is there?
I don't know about you, but my "tent" is not worthy of an overnight camp-out in my backyard. It is being destroyed and ravaged by cancer. Paul tells us that we "groan" in our "tents". As long as we reside in our "tents", we are "absent from the Lord" and our Heavenly destination. No wonder this life is so challenging.
Verse 8 of this passage states: ".....to be absent from the body is to be present with the Lord." I am convinced we struggle too much to maintain these earthly tents. People dread death - even Christians. Yet, when we remind ourselves of this verse, and know that once we are dead (aka absent from the body) that we are going to be present with the Lord, we can do no less than rejoice. Everyday we need to remind ourselves of this fact and then death will lose its sting and will pale in comparison to the promise of eternal life.
Lately, the Mercy Me song "Only Temporary" has been a favorite and a lyrical reminder of the teachings of this Scripture.
Don't let the situation get to you
This is not a hill worth dying on
Don't let these circumstances tear your heart in two
Soon enough this chapter will be gone
What's insurmountable today
Will surely one day fade away
CHORUS:
There's a reason why this world just don't feel right
Cause we are strangers who are simply passing by
In light of all eternity
It's only temporary
This place was never meant to be my home
Not comfortable in my own skin
Which may explain some of those days I feel alone
Standing on the outside looking in
But you're not hearing me complain
Cause I'm already on my way
This place was never meant to be my home
Not comfortable in my own skin
Link to the the music video for this song: http://www.youtube.com/watch?v=dZhCmvOhlKs
One of my life verses has been 2 Corinthians 4:16: 18: "Therefore we do not lose heart. Even though our outward man is perishing, yet the inward man is being renewed day by day. For our light affliction, which is but for a moment, is working for us a far more exceeding and eternal weight of glory, while we do not look at the things which are seen, but at the things which are not seen. For the things which are seen are temporary, but the things which are not seen are eternal".
No matter the depth of our pain and suffering and heartache today, we are assured that these are temporary afflictions. Don't give up - on yourself or on God. Don't doubt that you can wade through your difficulties. Don't forget that despite the intensity or long lasting of our heartaches, that they are "only temporary".
As I watch myself and so many Christians struggle against overwhelming trials and tribulations, I remind myself that we struggle on earth because this is not our home. We are lost foreigners with our true citizenship in Heaven ("For our citizenship is in heaven, from which we also eagerly wait for the Savior, the Lord Jesus Christ (Philippians 3:20). 2 Corinthians 5 presents a comparison between the temporary "tents" we reside in on earth and the lure of our eternal Home.
If asked today whether we would prefer living in a tent or a building, how would we reply? There are few, including myself, who would long to reside in a tent. Tents are temporary, they leak and break, and they are easily moved. Tents are not known for being comfortable and permanent. Conversely, buildings are permanent, not easily shaken and they offer the comforts of home that many of us experience. Paul uses this passage of Scripture to compare the body to our permanent homes in Heaven. There just is no comparison, is there?
I don't know about you, but my "tent" is not worthy of an overnight camp-out in my backyard. It is being destroyed and ravaged by cancer. Paul tells us that we "groan" in our "tents". As long as we reside in our "tents", we are "absent from the Lord" and our Heavenly destination. No wonder this life is so challenging.
Verse 8 of this passage states: ".....to be absent from the body is to be present with the Lord." I am convinced we struggle too much to maintain these earthly tents. People dread death - even Christians. Yet, when we remind ourselves of this verse, and know that once we are dead (aka absent from the body) that we are going to be present with the Lord, we can do no less than rejoice. Everyday we need to remind ourselves of this fact and then death will lose its sting and will pale in comparison to the promise of eternal life.
Lately, the Mercy Me song "Only Temporary" has been a favorite and a lyrical reminder of the teachings of this Scripture.
Don't let the situation get to you
This is not a hill worth dying on
Don't let these circumstances tear your heart in two
Soon enough this chapter will be gone
What's insurmountable today
Will surely one day fade away
CHORUS:
There's a reason why this world just don't feel right
Cause we are strangers who are simply passing by
In light of all eternity
It's only temporary
This place was never meant to be my home
Not comfortable in my own skin
Which may explain some of those days I feel alone
Standing on the outside looking in
But you're not hearing me complain
Cause I'm already on my way
This place was never meant to be my home
Not comfortable in my own skin
Link to the the music video for this song: http://www.youtube.com/watch?v=dZhCmvOhlKs
One of my life verses has been 2 Corinthians 4:16: 18: "Therefore we do not lose heart. Even though our outward man is perishing, yet the inward man is being renewed day by day. For our light affliction, which is but for a moment, is working for us a far more exceeding and eternal weight of glory, while we do not look at the things which are seen, but at the things which are not seen. For the things which are seen are temporary, but the things which are not seen are eternal".
No matter the depth of our pain and suffering and heartache today, we are assured that these are temporary afflictions. Don't give up - on yourself or on God. Don't doubt that you can wade through your difficulties. Don't forget that despite the intensity or long lasting of our heartaches, that they are "only temporary".
Wednesday, August 4, 2010
An Update & Request for Prayer: August 4, 2010
I offer my apologies for the delayed update. I have pondered and prayed over this update for many days (weeks). My leukemia journey has been sliding down a precarious pathway for the past year or so. If someone had told me when I was diagnosed, 14 years ago (on this August 18th), that my disease course would be so rocky, I would not have believed it and probably would have given up years ago.
This has been a perfect example for all of us to live each day fully and not to put off until tomorrow what we should do today. I encourage each person reading my blog to live life fully and to treasure each today, no matter your circumstances.
More importantly, if there is someone reading these words and who has yet to make Jesus the Lord of his or her life, I encourage you with all of my heart to make that commitment. “For whoever calls on the name of the Lord shall be saved” (Romans 10:13). Throughout this lengthy battle, I would not have survived the stress and strains without the presence of my Heavenly Father. For the hundreds of days that I have spent in ICU, I have rejoiced for all of the times He has reached down and rescued me and blessed me with more days with those I love. Of the most importance is the knowledge that I have my eternal destination determined. Death is not final for those of us who have confessed our sins and acknowledged Jesus as the Lord and Savior of our lives. When I exhale my last breath, I will be transported in a blinking of an eye to the throne of my Father. As these earthly days become more and more challenging, my new life in Heaven gains appeal. No pain. No tears. No heartache. No suffering. I will run on streets of gold to my mansion. The heavenly voices of the angelic choir will fill my ears. The presence of God will be beyond my comprehension.
Isaiah 43:2: “When you pass through the waters, I will be with you; and through the rivers, they shall not overflow you. When you walk through the fire, you shall not be burned, nor shall the flame scorch you.”
As I pass through these waters, I am not going to be burned. Everything in my flesh is trembling and confused and at times, overwhelmed. Yet, my spirit remains steadfast. To update my blog, I will have to type many negative findings and updates. These are the opinions of mortal men and women and we must never forget that our Lord reigns and He is the God of the impossible. I will never give up on a miracle slipping down from the Heavenlies to me. If that is not His plan for me, my soul is secure and I am ready for the heavenly journey ahead. God always knows best!
Despite the ICU stay in June and subsequent 21 days of IV antifungals, in the past two weeks, I have had three positive lung cultures return (AGAIN). I continue to have a productive cough, fevers, and some shortness of breath (especially on a day like today with a heat index of 117 degrees). It is difficult to believe this, but I have had some sort of infection every day since early September 2009. That is ten months – over 300 days -- of nonstop infections. Just the infections alone and their treatment are very draining to me. Such is life with a ship-wrecked immune system.
When I battled viral and bacterial infections early in my leukemia trek, I was always told that they would be relatively simple to diagnose, treat and recover from when compared to these nasty fungal infections. I believe that wholeheartedly. I better understand why so many people die from fungal infections when I see cultures taking 4-6 weeks and sometimes longer to provide identifications and sensitivities on the cultures. We will re-culture me this week to see if other pulmonary infections have developed since I remain symptomatic.
Recently, I have had several fungal skin infections on my trunk. We have been watching a new patch of something abnormal on my right cheek. Today, my doctor did a scraping of that to determine if that is fungal in nature. We will wait ………
The leukemia beast is rearing its nasty head – I have worsening of all B-symptoms - symptoms that oncologists follow that indicate disease advancement. Night sweats, fevers, splenomegaly (spleen is over a foot long in the longest dimension and it misplaces other organs when it is this large). My liver is also enlarging (hepatomegaly). The fatigue and pain levels have diminished my quality of life. In addition to the leukemia, the IV steroids I required in the hospital caused weakening of my muscles and despite going to the gym four nights a week prior to the hospital admission, I struggle with normal daily activities.
The doctors do not believe I can survive splenectomy (surgical removal of spleen) due to my infection risks and I still cannot locate a team that will attempt low dose splenic irradiation. After reviewing 20 years’ worth of studies on leukemia and low dose splenic irradiation, I still believe that it could have value to me. But who wants to listen to me?
I have consulted with several of my leukemia specialists and the consensus is unanimous – if I do not treat the leukemia, it will kill me. If I do treat the leukemia, an infection will likely kill me. One doctor told me it is not a matter of “if” an infection will kill me, it is “when” an infection will kill me. Another trusted specialist told me, "Untreated, you are going to succumb to infection sooner or later. Treatment might kill you sooner." We are so accustomed to medical science always having an answer for our health challenges. This situation is what some would deem in earthly terms - being between a rock and a hard place.
I had a difficult time with IVIG a couple of weeks ago. Since an allergist developed my current protocol (heavy premedications and an eight-nine hour infusion), I have tolerated IVIG well. That was until last month. I was very ill during the infusion and then later that night, the infusion site developed a hive-like rash. It had to happen on a Friday night when my three main physicians had all left on vacation! I spent the night popping steroids and Benadryl and applying prescription strength steroid cream to the rash and lo and behold, Dr. Stacie had it taken care of before the sun rose the next morning. We are trying to determine if the Opsite material that covered the IV site contained latex. If I am developing a latex allergy then we need to determine this.
I have a plan for today – notice I type “I”. I still need additional prayer about this plan as I am not 100 percent certain that all of the details are in line with God’s plan and I do not want to step outside of His direction for my life. My consultation today with my trusted family physician helped me to finalize some of the outline of this plan. I want God-breathed details and guidance to fill in the blanks of my outline. I am going to attempt – if I can secure some help – to return to the strict protocol I was following prior to my hospital admission. It is exhausting to coordinate the strict dietary guidelines, exercise, supplements, etc. and is something I cannot do on my own. My doctor went as far to say that even if I must hire someone to help me, this is about saving my life and that is what I will have to do. This protocol is from the Integrative Cancer Center I visited in Chicago in April. My family doctor believes I need to focus on regaining strength and supporting my fractured immune system. My CD4 T-Cell counts are lower than an AIDS patient right now and that opens an entirely new can of worms for me with regard to infection risks. I recently read in the Christian magazine, Charisma, an article about a missionary’s work with AIDS patients in Africa. They had seen increased CD4 T-Cell counts in these patients as they administered a product containing sea minerals and other natural products. I am trying to track down this missionary and the product to inquire if I can obtain it in the States and if he believes it will help non-AIDS patients who have T-Cell defects. Reversing my spiraling trend of falling T-Cells would be of great benefit to me and would result in fewer life threatening infections.
I had been considering an European protocol that used low dose chemotherapy agents Fludarabine and Cytoxan with elderly leukemia patients who were too weak for standard treatment. Most faired extremely well on the protocol and I had even discussed it with the Italian trial investigator. However, once we learned of the very low T-Cell count (and knowing that Fludarabine is the ultimate enemy of T-Cells), I have had to stop and reconsider that protocol. The Cancer Center in Chicago discussed fractionated chemotherapy with me. This is used in other countries and uses doses as low as 1/5 of the standard dosage of chemotherapy to treat end stage patients. Some protocols infuse the drugs with a pump over many days versus over a few hours to help limit toxicities. Makes perfect sense to me.
This has appeal to me and seems quite sensible. Yet, I am all too familiar with the inflexibilities of the USA’s medical system and insurance companies. Once I decide upon which chemotherapy agent I might consider using in fractionated doses, then I have the task to convince doctors and the insurance “gods” to orchestrate and pay for the protocol. So much to accomplish and so little stamina to do it!
The Mercy Me song “Hold Fast” has offered immense encouragement to me this summer. The lyrics remind us:
To everyone who's hurting To those who've had enough To all the undeserving That should cover all of us Please do not let go I promise there is hope
Hold fast
Help is on the way
Hold fast
He's come to save the day
What I've learned in my life
One thing greater than my strife
Is His grasp So hold fast
Will this season ever pass?
Can we stop this ride?
Will we see the sun at last?
Or could this be our lot in life?
Please do not let go
I promise you there's hope
You may think you're all alone
And there's no way that anyone could know
What you're going through
But if you only hear one thing
Just understand that we are all the same
Searching for the truth
The truth of what we're soon to face
Unless someone comes to take our place
Is there anyone?
All we want is to be free
Free from our captivity,
Lord Here He comes
You Tube Video Link: http://www.youtube.com/watch?v=uWejcH0JWTc
So, I am holding fast. For my family and friends who read this, who might shed a tear for me, let me encourage you that we are not alone. God remains very near to each of His children even when the day is the darkest and our hearts are the most troubled. Hold fast, my dear ones, hold fast.
(And thank you so much for your prayers and encouraging posts!)
This has been a perfect example for all of us to live each day fully and not to put off until tomorrow what we should do today. I encourage each person reading my blog to live life fully and to treasure each today, no matter your circumstances.
More importantly, if there is someone reading these words and who has yet to make Jesus the Lord of his or her life, I encourage you with all of my heart to make that commitment. “For whoever calls on the name of the Lord shall be saved” (Romans 10:13). Throughout this lengthy battle, I would not have survived the stress and strains without the presence of my Heavenly Father. For the hundreds of days that I have spent in ICU, I have rejoiced for all of the times He has reached down and rescued me and blessed me with more days with those I love. Of the most importance is the knowledge that I have my eternal destination determined. Death is not final for those of us who have confessed our sins and acknowledged Jesus as the Lord and Savior of our lives. When I exhale my last breath, I will be transported in a blinking of an eye to the throne of my Father. As these earthly days become more and more challenging, my new life in Heaven gains appeal. No pain. No tears. No heartache. No suffering. I will run on streets of gold to my mansion. The heavenly voices of the angelic choir will fill my ears. The presence of God will be beyond my comprehension.
Isaiah 43:2: “When you pass through the waters, I will be with you; and through the rivers, they shall not overflow you. When you walk through the fire, you shall not be burned, nor shall the flame scorch you.”
As I pass through these waters, I am not going to be burned. Everything in my flesh is trembling and confused and at times, overwhelmed. Yet, my spirit remains steadfast. To update my blog, I will have to type many negative findings and updates. These are the opinions of mortal men and women and we must never forget that our Lord reigns and He is the God of the impossible. I will never give up on a miracle slipping down from the Heavenlies to me. If that is not His plan for me, my soul is secure and I am ready for the heavenly journey ahead. God always knows best!
Despite the ICU stay in June and subsequent 21 days of IV antifungals, in the past two weeks, I have had three positive lung cultures return (AGAIN). I continue to have a productive cough, fevers, and some shortness of breath (especially on a day like today with a heat index of 117 degrees). It is difficult to believe this, but I have had some sort of infection every day since early September 2009. That is ten months – over 300 days -- of nonstop infections. Just the infections alone and their treatment are very draining to me. Such is life with a ship-wrecked immune system.
When I battled viral and bacterial infections early in my leukemia trek, I was always told that they would be relatively simple to diagnose, treat and recover from when compared to these nasty fungal infections. I believe that wholeheartedly. I better understand why so many people die from fungal infections when I see cultures taking 4-6 weeks and sometimes longer to provide identifications and sensitivities on the cultures. We will re-culture me this week to see if other pulmonary infections have developed since I remain symptomatic.
Recently, I have had several fungal skin infections on my trunk. We have been watching a new patch of something abnormal on my right cheek. Today, my doctor did a scraping of that to determine if that is fungal in nature. We will wait ………
The leukemia beast is rearing its nasty head – I have worsening of all B-symptoms - symptoms that oncologists follow that indicate disease advancement. Night sweats, fevers, splenomegaly (spleen is over a foot long in the longest dimension and it misplaces other organs when it is this large). My liver is also enlarging (hepatomegaly). The fatigue and pain levels have diminished my quality of life. In addition to the leukemia, the IV steroids I required in the hospital caused weakening of my muscles and despite going to the gym four nights a week prior to the hospital admission, I struggle with normal daily activities.
The doctors do not believe I can survive splenectomy (surgical removal of spleen) due to my infection risks and I still cannot locate a team that will attempt low dose splenic irradiation. After reviewing 20 years’ worth of studies on leukemia and low dose splenic irradiation, I still believe that it could have value to me. But who wants to listen to me?
I have consulted with several of my leukemia specialists and the consensus is unanimous – if I do not treat the leukemia, it will kill me. If I do treat the leukemia, an infection will likely kill me. One doctor told me it is not a matter of “if” an infection will kill me, it is “when” an infection will kill me. Another trusted specialist told me, "Untreated, you are going to succumb to infection sooner or later. Treatment might kill you sooner." We are so accustomed to medical science always having an answer for our health challenges. This situation is what some would deem in earthly terms - being between a rock and a hard place.
I had a difficult time with IVIG a couple of weeks ago. Since an allergist developed my current protocol (heavy premedications and an eight-nine hour infusion), I have tolerated IVIG well. That was until last month. I was very ill during the infusion and then later that night, the infusion site developed a hive-like rash. It had to happen on a Friday night when my three main physicians had all left on vacation! I spent the night popping steroids and Benadryl and applying prescription strength steroid cream to the rash and lo and behold, Dr. Stacie had it taken care of before the sun rose the next morning. We are trying to determine if the Opsite material that covered the IV site contained latex. If I am developing a latex allergy then we need to determine this.
I have a plan for today – notice I type “I”. I still need additional prayer about this plan as I am not 100 percent certain that all of the details are in line with God’s plan and I do not want to step outside of His direction for my life. My consultation today with my trusted family physician helped me to finalize some of the outline of this plan. I want God-breathed details and guidance to fill in the blanks of my outline. I am going to attempt – if I can secure some help – to return to the strict protocol I was following prior to my hospital admission. It is exhausting to coordinate the strict dietary guidelines, exercise, supplements, etc. and is something I cannot do on my own. My doctor went as far to say that even if I must hire someone to help me, this is about saving my life and that is what I will have to do. This protocol is from the Integrative Cancer Center I visited in Chicago in April. My family doctor believes I need to focus on regaining strength and supporting my fractured immune system. My CD4 T-Cell counts are lower than an AIDS patient right now and that opens an entirely new can of worms for me with regard to infection risks. I recently read in the Christian magazine, Charisma, an article about a missionary’s work with AIDS patients in Africa. They had seen increased CD4 T-Cell counts in these patients as they administered a product containing sea minerals and other natural products. I am trying to track down this missionary and the product to inquire if I can obtain it in the States and if he believes it will help non-AIDS patients who have T-Cell defects. Reversing my spiraling trend of falling T-Cells would be of great benefit to me and would result in fewer life threatening infections.
I had been considering an European protocol that used low dose chemotherapy agents Fludarabine and Cytoxan with elderly leukemia patients who were too weak for standard treatment. Most faired extremely well on the protocol and I had even discussed it with the Italian trial investigator. However, once we learned of the very low T-Cell count (and knowing that Fludarabine is the ultimate enemy of T-Cells), I have had to stop and reconsider that protocol. The Cancer Center in Chicago discussed fractionated chemotherapy with me. This is used in other countries and uses doses as low as 1/5 of the standard dosage of chemotherapy to treat end stage patients. Some protocols infuse the drugs with a pump over many days versus over a few hours to help limit toxicities. Makes perfect sense to me.
This has appeal to me and seems quite sensible. Yet, I am all too familiar with the inflexibilities of the USA’s medical system and insurance companies. Once I decide upon which chemotherapy agent I might consider using in fractionated doses, then I have the task to convince doctors and the insurance “gods” to orchestrate and pay for the protocol. So much to accomplish and so little stamina to do it!
The Mercy Me song “Hold Fast” has offered immense encouragement to me this summer. The lyrics remind us:
To everyone who's hurting To those who've had enough To all the undeserving That should cover all of us Please do not let go I promise there is hope
Hold fast
Help is on the way
Hold fast
He's come to save the day
What I've learned in my life
One thing greater than my strife
Is His grasp So hold fast
Will this season ever pass?
Can we stop this ride?
Will we see the sun at last?
Or could this be our lot in life?
Please do not let go
I promise you there's hope
You may think you're all alone
And there's no way that anyone could know
What you're going through
But if you only hear one thing
Just understand that we are all the same
Searching for the truth
The truth of what we're soon to face
Unless someone comes to take our place
Is there anyone?
All we want is to be free
Free from our captivity,
Lord Here He comes
You Tube Video Link: http://www.youtube.com/watch?v=uWejcH0JWTc
So, I am holding fast. For my family and friends who read this, who might shed a tear for me, let me encourage you that we are not alone. God remains very near to each of His children even when the day is the darkest and our hearts are the most troubled. Hold fast, my dear ones, hold fast.
(And thank you so much for your prayers and encouraging posts!)
Friday, July 23, 2010
You Carried Me
He carried me and continues to carry me. My life and body are so broken yet He continues to pick up the pieces and carry me into the next tomorrow. When the sun rises, he lifts me up and carries me through yet another day.
"You Carried Me"
Building 429
I've been so busy
I missed the reasons
I missed Your love
and I nearly missed it all
Still You've held me
And You've healed me
You've given all
And it brought me to Your cross
And I stand only because
You've given me grace to walk
Only because
[CHORUS]
You carried me
You carried me
You carried me through it all
And I believe
Yes I believe
You'll carry me all the way home
Cause mercy covers all
I know the scripture
I've known the songs
I sang the words
from my hollowed heart
But You've spoken softly
Through the storm
I've heard Your voice
and I've felt the calm
I stand only because
You've given me faith to walk
Only because
[CHORUS]
You carried me
You carried me
You carried me through it all
And I believe
Yes I believe
You'll carry me all the way home
Lord I know that you love me
I'll never doubt it
I can't live without it
Your mercy has found me
I am astounded
I can't live without it, oooh
You carried me, You carried me
You carried me through it all...
You carried me
You carried me
And I believe
Yeah I believe
You'll carry me all the way home
Cause mercy covers all
Mercy covers all
Yeah, yeah
And I believe
http://www.youtube.com/watch?v=75YZ8ByHSrM
"You Carried Me"
Building 429
I've been so busy
I missed the reasons
I missed Your love
and I nearly missed it all
Still You've held me
And You've healed me
You've given all
And it brought me to Your cross
And I stand only because
You've given me grace to walk
Only because
[CHORUS]
You carried me
You carried me
You carried me through it all
And I believe
Yes I believe
You'll carry me all the way home
Cause mercy covers all
I know the scripture
I've known the songs
I sang the words
from my hollowed heart
But You've spoken softly
Through the storm
I've heard Your voice
and I've felt the calm
I stand only because
You've given me faith to walk
Only because
[CHORUS]
You carried me
You carried me
You carried me through it all
And I believe
Yes I believe
You'll carry me all the way home
Lord I know that you love me
I'll never doubt it
I can't live without it
Your mercy has found me
I am astounded
I can't live without it, oooh
You carried me, You carried me
You carried me through it all...
You carried me
You carried me
And I believe
Yeah I believe
You'll carry me all the way home
Cause mercy covers all
Mercy covers all
Yeah, yeah
And I believe
http://www.youtube.com/watch?v=75YZ8ByHSrM
Wednesday, July 14, 2010
Forgiving Others
Learning to forgive those who hurt or offend us is one of the greatest abilities we can ever achieve. And apart from the Holy Spirit working in our hearts and lives, we cannot do this on our own. Today, let us reflect on those who have hurt us and we have failed to forgive and then meditate on these verses and quotes. May we each be challenged to forgive the person who has hurt us the most deeply.
Matthew 6: 14-15
“If you forgive men when they sin against you, your Heavenly Father will also forgive you. But if you do not forgive men their sins, your Father will not forgive your sins.”
Unforgiveness can drag us down and figuratively bury us. Often the times the person we need to forgive, goes on living with not even a portion of the heartache and pain that we carry in our unforgiveness. Most importantly, unforgiveness erects a looming barricade between us and our Father. If we think we cannot forgive someone because the hurts they have inflicted are much too painful, let us recall the tragic death our Savior died on a cross for the forgiveness of our sins. Our hurts pale in comparison, don’t they?
I do not know the author of this quote, but it is a powerful quote for us to consider.
“Every person should have a special cemetery lot in which to bury the faults of friends and loved ones. To forgive is to set a prisoner free and discover the prisoner was YOU.”
Again, we are urged to forgive because in doing so, we are freed in a way that only true forgiveness can generate. Note in this quote that we are to bury – and not dig up – those faults in need of forgiveness. Too often, we will say in words that we forgive someone, but we will cling to the baggage and hurt which confirms that true forgiveness has not occurred.
“Hate is a prolonged form of suicide.” –Douglas V. Steere
Such truth composes this quote. Hate and unforgivness gnaw away at our spirits and souls. Thought by thought, memory by memory, and heartache by heartache……as long as we do not forgive those who offend us, the erosion of our lives slowly transpires. And before we realize how critical the unforgiveness in our lives has become, our hopes and dreams are eradicated by our own unforgiveness.
As Christians, God has given us the “ministry of reconciliation” (2 Corinthians 6:18). What does this reconciliation require of each of us …… understanding, resolution, compromise, reunion, ceasefire, bringing together, appeasement……may we each commit our lives and hearts and minds to forgiveness and reconciliation in each relationship that challenges us.
Matthew 6: 14-15
“If you forgive men when they sin against you, your Heavenly Father will also forgive you. But if you do not forgive men their sins, your Father will not forgive your sins.”
Unforgiveness can drag us down and figuratively bury us. Often the times the person we need to forgive, goes on living with not even a portion of the heartache and pain that we carry in our unforgiveness. Most importantly, unforgiveness erects a looming barricade between us and our Father. If we think we cannot forgive someone because the hurts they have inflicted are much too painful, let us recall the tragic death our Savior died on a cross for the forgiveness of our sins. Our hurts pale in comparison, don’t they?
I do not know the author of this quote, but it is a powerful quote for us to consider.
“Every person should have a special cemetery lot in which to bury the faults of friends and loved ones. To forgive is to set a prisoner free and discover the prisoner was YOU.”
Again, we are urged to forgive because in doing so, we are freed in a way that only true forgiveness can generate. Note in this quote that we are to bury – and not dig up – those faults in need of forgiveness. Too often, we will say in words that we forgive someone, but we will cling to the baggage and hurt which confirms that true forgiveness has not occurred.
“Hate is a prolonged form of suicide.” –Douglas V. Steere
Such truth composes this quote. Hate and unforgivness gnaw away at our spirits and souls. Thought by thought, memory by memory, and heartache by heartache……as long as we do not forgive those who offend us, the erosion of our lives slowly transpires. And before we realize how critical the unforgiveness in our lives has become, our hopes and dreams are eradicated by our own unforgiveness.
As Christians, God has given us the “ministry of reconciliation” (2 Corinthians 6:18). What does this reconciliation require of each of us …… understanding, resolution, compromise, reunion, ceasefire, bringing together, appeasement……may we each commit our lives and hearts and minds to forgiveness and reconciliation in each relationship that challenges us.
No Matter What
Today I received an e-mail with this message from someone I have never met. She is on a prayer chain that has faithfully prayed for me for quite some time. I wanted to share what she wrote and this song that she sent to me. I pray that it will encourage someone else today. Thank you Kelli and Donna!
Kelli wrote: This song reminds me of what Stacie is living -- have you heard it by Kerrie Roberts called "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 You can find a way to keep me from the pain
But if not, I'll trust you
No matter what, no matter what
When I'm stuck and there's nothing else 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 will be my strength,
No matter what, I'm gonna love You
No matter what I'm gonna need You
I know You can find a way to keep me from the pain
But 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 okay 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 You can find a way to keep me from the pain
But if not, I'll trust You
No matter what, no matter what
I know You can find a way to keep me from the pain
But if not, I'll trust you
No matter what, no matter what
No matter, no matter what
To listen to the song: http://www.youtube.com/watch?v=OA3MSqufJP4
Kelli wrote: This song reminds me of what Stacie is living -- have you heard it by Kerrie Roberts called "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 You can find a way to keep me from the pain
But if not, I'll trust you
No matter what, no matter what
When I'm stuck and there's nothing else 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 will be my strength,
No matter what, I'm gonna love You
No matter what I'm gonna need You
I know You can find a way to keep me from the pain
But 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 okay 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 You can find a way to keep me from the pain
But if not, I'll trust You
No matter what, no matter what
I know You can find a way to keep me from the pain
But if not, I'll trust you
No matter what, no matter what
No matter, no matter what
To listen to the song: http://www.youtube.com/watch?v=OA3MSqufJP4
Sunday, July 11, 2010
22 Months Old
Yes, Lil Man has reached his 22 month milestone! He possesses this amazing ability to restore his Grammy back to her feet after difficult days. After the ICU admission and weeks of IV's, procedures, and more testing, Lil Man decided to reinfuse my life and spirit with joy and encouragement.
One morning the week before last, I arrived to pick him up at his Mommy's office. They opened the back door and he blurted out, "GRAMMY"! I could barely believe what my ears had just heard. And again, he shouted, "GRAMMY!" Now, he had been calling GramPY, the endeared name of PEE and GramMY had been called MEE up to that time. No word like GRAMMY has brought such joy to my heart. Now, Lil Man follows me around the house and probably says, "GRAMMY" about one hundred times daily. (Forgive me, but Grammys are allowed to exaggerate when it comes to their grands!)
His vocabulary is amazing and we are tickled pink about a few of his word pronunciations. On his farm, they grow corn and beans. We ask him, "What crops does your Dad grow on the farm?" And he promptly responds, "Corn and beanAS". Beans are always pronounced BeanAS and we roll with laughter. We have to be cautious if we order green beanAS in a restaurant because all of us have found ourselves pronouncing beanAS in this unique fashion.
He has enjoyed July's fireworks, fairs and carnivals. Hopefully, this week if Grammy gathers up some energy, I will be able to take him to a local fair and carnival. He already has plans to play in his water table tomorrow. He was visiting this evening to celebrate his Uncle Philip's 31st birthday and he has already gathered up all of his water toys. He is so smart - just ask all of us who love him! We are not biased or partial in our assessments of his intelligence and many other talents.
One morning the week before last, I arrived to pick him up at his Mommy's office. They opened the back door and he blurted out, "GRAMMY"! I could barely believe what my ears had just heard. And again, he shouted, "GRAMMY!" Now, he had been calling GramPY, the endeared name of PEE and GramMY had been called MEE up to that time. No word like GRAMMY has brought such joy to my heart. Now, Lil Man follows me around the house and probably says, "GRAMMY" about one hundred times daily. (Forgive me, but Grammys are allowed to exaggerate when it comes to their grands!)
His vocabulary is amazing and we are tickled pink about a few of his word pronunciations. On his farm, they grow corn and beans. We ask him, "What crops does your Dad grow on the farm?" And he promptly responds, "Corn and beanAS". Beans are always pronounced BeanAS and we roll with laughter. We have to be cautious if we order green beanAS in a restaurant because all of us have found ourselves pronouncing beanAS in this unique fashion.
He has enjoyed July's fireworks, fairs and carnivals. Hopefully, this week if Grammy gathers up some energy, I will be able to take him to a local fair and carnival. He already has plans to play in his water table tomorrow. He was visiting this evening to celebrate his Uncle Philip's 31st birthday and he has already gathered up all of his water toys. He is so smart - just ask all of us who love him! We are not biased or partial in our assessments of his intelligence and many other talents.
Enemy Leukemia
Enemy Leukemia
waging war in my body
as enemy combatant,
adversary to my life.
Never to my soul.
Leukemia cells live and live and live...
incapable of dying.
accumulating and destroying my body,
taunting and teasing my mind.
Never touching my soul.
Stealth in its abilities
to dodge weapons of
chemotherapy destruction;
evading the smart bomb.
Never stealth and covert to my Father.
Just one stealth cell thriving
in marrow or blood;
one cell.
Remission is stolen;
life is shortened on this earth.
Never touches my eternal life.
--Copyright Stacie
waging war in my body
as enemy combatant,
adversary to my life.
Never to my soul.
Leukemia cells live and live and live...
incapable of dying.
accumulating and destroying my body,
taunting and teasing my mind.
Never touching my soul.
Stealth in its abilities
to dodge weapons of
chemotherapy destruction;
evading the smart bomb.
Never stealth and covert to my Father.
Just one stealth cell thriving
in marrow or blood;
one cell.
Remission is stolen;
life is shortened on this earth.
Never touches my eternal life.
--Copyright Stacie
Wisdom from the Book of Philippians 1
I have been studying the book of Acts and some of the letters written by the Apostle Paul. I just marvel at his wisdom in words. I wanted to share some of my favorite verses from the book of Philippians and I pray that they speak to your spirits as they have spoken to mine. May each of us be challenged and encouraged as we meditate on these words. Each day this week, may we challenge ourselves to take one of these verses and strive to live it out fully in our own lives. If you are challenged or changed by one of these verses, post your praises to God on this post! All glory be to Him.
"And this is my prayer: That your love may abound more and more in knowledge and depth of insight, so that you may be able to discern what is best and may be pure and blameless until the day of Christ, filled with the fruit of righteousness that comes through Jesus Christ — to the glory and praise of God (Philippians 1:9-11)."
Discerning what is best - don't we each desire that? I want to discern the best treatment for myself. I want my children to discern the best plans God has for their lives. I want leaders of our country to discern the best course of action for our nation. We cannot exhibit such discernment without the love and righteousness of Christ in our lives. May we open the doors of our heart each day and ask Him to reign and rule over our lives.
"...for I know that through your prayers and the help given by the Spirit of Jesus Christ, what has happened to me will turn out for my deliverance (Philippians 1:19)."
Knowing with this type of certainty that God is in control of our lives and that by living our lives in obedience to Him and His Word that all things are going to work for our good, is such a guarantee of peace. I am certain that no matter what mayhem leukemia causes in my life, that I will one day be delivered from its destruction. May each of us engage the resources of prayer and guidance of the Holy Spirit (through prayer and God's Holy Word) to foster this type of confidence in our futures.
"I eagerly expect and hope that I will in no way be ashamed, but will have sufficient courage so that now as always Christ will be exalted in my body, whether by life or by death. For to me, to live is Christ and to die is gain. If I am to go on living in the body, this will mean fruitful labor for me. Yet what shall I choose? I do not know! I am torn between the two: I desire to depart and be with Christ, which is better by far; but it is more necessary for you that I remain in the body (Philippians 1:20-24)."
Don't Paul's words and reflections resound in your spirit? They speak loudly to me. I recall early on after my leukemia diagnosis, that I was concerned that my faith would be shaken and that Christ would not be exalted in my life. This was and continues to be a personal prayer of mine. Never, do I want a life challenge to shake my faith foundations. The Scripture in verse 21: "For to me, to live is Christ and to die is gain" is one that I have requested be engraved on my grave marker. He has certainly kept me alive and life would not have been mine without all of the acts of healing and mercy that He has extended to me. However, to die will certainly be gain for each of us who have believed in the Lord Jesus Christ for forgiveness of our sins and salvation of our souls. Even Paul wavered and pondered about which to choose - he was "torn between the two". If today is a day of challenge for you, refocus your thought life and energies on the Word of God. Don't be distracted or side-tracked by today's trials and tribulations. Eternal life awaits the children of the Most High God - "to die is gain".
"Whatever happens, conduct yourselves in a manner worthy of the gospel of Christ" (Philippians 1: 27).
So few words with such immense instruction. Imagine if each of us could master this statement: WHATEVER HAPPENS, CONDUCT YOURSELVES IN A MANNER WORTHY OF THE GOSPEL OF CHRIST."
WHATEVER HAPPENS.
WHATEVER HAPPENS.
Whatever could include being told you are dying; that you have lost your job or all of your finances; that you have been betrayed by family or friends; that your heart has been ripped into a billion tiny pieces; that your loved one just died; that your child has turned his back on his faith; that depression has stolen your joy - WHATEVER HAPPENS. May each of us conduct ourselves in ways that are pleasing to our Father when we are rejoicing on life's mountaintops and when we are sobbing in the valleys of our lives. Whatever happens ........
"And this is my prayer: That your love may abound more and more in knowledge and depth of insight, so that you may be able to discern what is best and may be pure and blameless until the day of Christ, filled with the fruit of righteousness that comes through Jesus Christ — to the glory and praise of God (Philippians 1:9-11)."
Discerning what is best - don't we each desire that? I want to discern the best treatment for myself. I want my children to discern the best plans God has for their lives. I want leaders of our country to discern the best course of action for our nation. We cannot exhibit such discernment without the love and righteousness of Christ in our lives. May we open the doors of our heart each day and ask Him to reign and rule over our lives.
"...for I know that through your prayers and the help given by the Spirit of Jesus Christ, what has happened to me will turn out for my deliverance (Philippians 1:19)."
Knowing with this type of certainty that God is in control of our lives and that by living our lives in obedience to Him and His Word that all things are going to work for our good, is such a guarantee of peace. I am certain that no matter what mayhem leukemia causes in my life, that I will one day be delivered from its destruction. May each of us engage the resources of prayer and guidance of the Holy Spirit (through prayer and God's Holy Word) to foster this type of confidence in our futures.
"I eagerly expect and hope that I will in no way be ashamed, but will have sufficient courage so that now as always Christ will be exalted in my body, whether by life or by death. For to me, to live is Christ and to die is gain. If I am to go on living in the body, this will mean fruitful labor for me. Yet what shall I choose? I do not know! I am torn between the two: I desire to depart and be with Christ, which is better by far; but it is more necessary for you that I remain in the body (Philippians 1:20-24)."
Don't Paul's words and reflections resound in your spirit? They speak loudly to me. I recall early on after my leukemia diagnosis, that I was concerned that my faith would be shaken and that Christ would not be exalted in my life. This was and continues to be a personal prayer of mine. Never, do I want a life challenge to shake my faith foundations. The Scripture in verse 21: "For to me, to live is Christ and to die is gain" is one that I have requested be engraved on my grave marker. He has certainly kept me alive and life would not have been mine without all of the acts of healing and mercy that He has extended to me. However, to die will certainly be gain for each of us who have believed in the Lord Jesus Christ for forgiveness of our sins and salvation of our souls. Even Paul wavered and pondered about which to choose - he was "torn between the two". If today is a day of challenge for you, refocus your thought life and energies on the Word of God. Don't be distracted or side-tracked by today's trials and tribulations. Eternal life awaits the children of the Most High God - "to die is gain".
"Whatever happens, conduct yourselves in a manner worthy of the gospel of Christ" (Philippians 1: 27).
So few words with such immense instruction. Imagine if each of us could master this statement: WHATEVER HAPPENS, CONDUCT YOURSELVES IN A MANNER WORTHY OF THE GOSPEL OF CHRIST."
WHATEVER HAPPENS.
WHATEVER HAPPENS.
Whatever could include being told you are dying; that you have lost your job or all of your finances; that you have been betrayed by family or friends; that your heart has been ripped into a billion tiny pieces; that your loved one just died; that your child has turned his back on his faith; that depression has stolen your joy - WHATEVER HAPPENS. May each of us conduct ourselves in ways that are pleasing to our Father when we are rejoicing on life's mountaintops and when we are sobbing in the valleys of our lives. Whatever happens ........
Update & Request for Prayer: July 11, 2010
My apologies for the delay in updating my blog. I have had some technical challenges with my laptop and I am not a pro at posting from my cell phone yet, so I have just remained silent. I am grateful for all of you who post a comment of concern or who drop me an e-mail to inquire if I have returned to the "slammer" (aka ICU).
The PICC line site healed well and I have not developed any infections from that procedure. We realize that removing it may result in my turning around and having to have another line inserted if the fungal cultures are positive from either the sinus or lung scopes from last month.
I continue to run periodic fevers and have a productive cough. I anticipate the end of this week will be the earliest that we might receive preliminary fungal cultures from the two scopes. More likely, it will be another two weeks. If these fungal cultures are negative, then I believe this will be a stronger indicator that my NIH physician's suggestion that the leukemia might be infiltrating my lungs is accurate. And while we always view fevers in the context of infection, fevers also can be a "B symptom" of leukemia - symptoms that can indicate that the leukemia is progressing. This past week, I reviewed this list of classic "B Symptoms" and was quite alarmed to realize that I now possess every symptom on the list.
I have remained very fatigued - some days just the motions of everyday life seem very overwhelming, yet I attempt to strive on and maintain some normalcy in my life. In the midst of the physical fatigue, a deep, brain fog presides over my thinking - another reason my blog updates have been sparse. Some days just formatting a paragraph seems to zap my energy. I have been researching to see if I can locate any chemotherapy protocol that could be survivable for an end stage patient.
I vacillate between feeling a moment of temptation that yearns to strike the leukemia with a potent weapon of destruction (chemotherapy) to returning to my current state of engaging only palliative care options. I will not move ahead until I have clear peace and guidance that only the Holy Spirit can provide to me.
The current chemotherapy protocol that I have been reviewing is from an Italian clinical trial. I have corresponded with the primary investigator in Italy. This protocol studied the chemotherapy agents Fludarabine and Cytoxan, used in low doses in an elderly population of patients. The reasoning was that this elderly population could not survive standard chemotherapy doses. While my age is far from being considered "elderly", it is doubted if my body can withstand many chemotherapy protocols due to my lengthy leukemia battle and fractured immune system. I have taken full dose Fludrabine in the past and it is the drug that wrecked serious havoc with my T-Cells (vital immune system cells). The last dose of Fludarabine I took was in 2004 and six years later, my T-Cells remain at very low levels. I have never received the other drug, Cytoxan. If I decided upon this Italian protocol, I would have to convince my physicians and the insurance "gods" to approve it for me. This protocol would mean 4 days of chemotherapy every 28 days for four to six months.
Two other alternative treatments that I am considering are also widely used in Europe but not in the USA. Mistletoe extract (Iscador) has been estimated that 40-60 percent of European oncologists are using Iscador with their cancer patients. The other possible alternative treatment is Carnivora (extract of the Venus flytrap). I am researching both of these options. Interestingly, one recent study on Iscador reviewed its use with Cytoxan (the chemotherapy drug I mentioned above) and the Iscador increased the effectiveness of the Cytoxan.
Decisions such as the ones that I am facing are not made without much prayer, much research and much reflection. I ask that you continue to uphold me in your prayers. I want God to reveal the path He has for me to pursue. I know MY plans will not succeed without Him. Proverbs 16:9 reminds me: "A man’s heart plans his way, but the LORD directs his steps." I can make all the plans in the world, but I desire for the Lord to be directing each step. He doesn't make mistakes like I do!
The PICC line site healed well and I have not developed any infections from that procedure. We realize that removing it may result in my turning around and having to have another line inserted if the fungal cultures are positive from either the sinus or lung scopes from last month.
I continue to run periodic fevers and have a productive cough. I anticipate the end of this week will be the earliest that we might receive preliminary fungal cultures from the two scopes. More likely, it will be another two weeks. If these fungal cultures are negative, then I believe this will be a stronger indicator that my NIH physician's suggestion that the leukemia might be infiltrating my lungs is accurate. And while we always view fevers in the context of infection, fevers also can be a "B symptom" of leukemia - symptoms that can indicate that the leukemia is progressing. This past week, I reviewed this list of classic "B Symptoms" and was quite alarmed to realize that I now possess every symptom on the list.
I have remained very fatigued - some days just the motions of everyday life seem very overwhelming, yet I attempt to strive on and maintain some normalcy in my life. In the midst of the physical fatigue, a deep, brain fog presides over my thinking - another reason my blog updates have been sparse. Some days just formatting a paragraph seems to zap my energy. I have been researching to see if I can locate any chemotherapy protocol that could be survivable for an end stage patient.
I vacillate between feeling a moment of temptation that yearns to strike the leukemia with a potent weapon of destruction (chemotherapy) to returning to my current state of engaging only palliative care options. I will not move ahead until I have clear peace and guidance that only the Holy Spirit can provide to me.
The current chemotherapy protocol that I have been reviewing is from an Italian clinical trial. I have corresponded with the primary investigator in Italy. This protocol studied the chemotherapy agents Fludarabine and Cytoxan, used in low doses in an elderly population of patients. The reasoning was that this elderly population could not survive standard chemotherapy doses. While my age is far from being considered "elderly", it is doubted if my body can withstand many chemotherapy protocols due to my lengthy leukemia battle and fractured immune system. I have taken full dose Fludrabine in the past and it is the drug that wrecked serious havoc with my T-Cells (vital immune system cells). The last dose of Fludarabine I took was in 2004 and six years later, my T-Cells remain at very low levels. I have never received the other drug, Cytoxan. If I decided upon this Italian protocol, I would have to convince my physicians and the insurance "gods" to approve it for me. This protocol would mean 4 days of chemotherapy every 28 days for four to six months.
Two other alternative treatments that I am considering are also widely used in Europe but not in the USA. Mistletoe extract (Iscador) has been estimated that 40-60 percent of European oncologists are using Iscador with their cancer patients. The other possible alternative treatment is Carnivora (extract of the Venus flytrap). I am researching both of these options. Interestingly, one recent study on Iscador reviewed its use with Cytoxan (the chemotherapy drug I mentioned above) and the Iscador increased the effectiveness of the Cytoxan.
Decisions such as the ones that I am facing are not made without much prayer, much research and much reflection. I ask that you continue to uphold me in your prayers. I want God to reveal the path He has for me to pursue. I know MY plans will not succeed without Him. Proverbs 16:9 reminds me: "A man’s heart plans his way, but the LORD directs his steps." I can make all the plans in the world, but I desire for the Lord to be directing each step. He doesn't make mistakes like I do!
Friday, July 2, 2010
A Prayer for Today: July 2, 2010
Father,
We rejoice for the Holy Spirit's comforting and guidance. We are grateful for the Helper whom You have left with us. Where would we be without the Holy Spirit in our lives? Luke 12:12 instructs us: "For the Holy Spirit will teach you in that very hour what you ought to say.” So tonight, Lord, I pray that each of our spirits will be prompted by the Holy Spirit to pray for needs that surround us.
Before I ask Your touch upon so many urgent petitions tonight, I ask You, Father, to "Search me, O God, and know my heart; try me, and know my anxieties; and see if there is any wicked way in me,and lead me in the way everlasting" (Psalm 139:23-24. May our hearts, minds and souls be cleansed by the Blood of Jesus.
Lord, as I type this, you are aware of the heartaches and concerns that each of us is facing. May the presence of the Holy Spirit be deeply sensed by us daily. May Your peace flood each soul's heart. May Your purpose be sensed in each soul's life. May Your hope be instilled in each soul's spirit. May we be always inclined to seek YOUR way for OUR lives. I am thankful that Your ways are always right for us.
We love you, Dear Father. We are grateful beyond what words can express for your goodness and mercy that You extend to each of Your children.
In Jesus' Name I pray. AMEN.
We rejoice for the Holy Spirit's comforting and guidance. We are grateful for the Helper whom You have left with us. Where would we be without the Holy Spirit in our lives? Luke 12:12 instructs us: "For the Holy Spirit will teach you in that very hour what you ought to say.” So tonight, Lord, I pray that each of our spirits will be prompted by the Holy Spirit to pray for needs that surround us.
Before I ask Your touch upon so many urgent petitions tonight, I ask You, Father, to "Search me, O God, and know my heart; try me, and know my anxieties; and see if there is any wicked way in me,and lead me in the way everlasting" (Psalm 139:23-24. May our hearts, minds and souls be cleansed by the Blood of Jesus.
Lord, as I type this, you are aware of the heartaches and concerns that each of us is facing. May the presence of the Holy Spirit be deeply sensed by us daily. May Your peace flood each soul's heart. May Your purpose be sensed in each soul's life. May Your hope be instilled in each soul's spirit. May we be always inclined to seek YOUR way for OUR lives. I am thankful that Your ways are always right for us.
We love you, Dear Father. We are grateful beyond what words can express for your goodness and mercy that You extend to each of Your children.
In Jesus' Name I pray. AMEN.
House Call
As I had mentioned, my trusted NIH/NCI (National Institutes of Health/National Cancer Institute) physician, Dr. M. drove over 700 miles this week to visit us – what a house call! I have been so blessed with physicians who are compassionate, brilliant caregivers.
To be able to sit and chat with him about new research, new protocols, reflections on current treatment, and other breaking news from the leukemia experts was a blessing as was just spending time with a man who has meant so much to my longevity with leukemia. He has cared for me over a decade and this week marked his retirement although his lengthy leukemia-driven plans did not sound like someone who had retired! He will be speaking at CLL symposiums in Italy and Spain later this year.
Dr. M. has consulted extensively through these years with my local family physician. Ironically, both of them were born and raised in Iowa and she came to our home last night to meet Dr. M. and to visit with him. Kevin took this photo last night of me with these two beloved doctors. Dr. M. departed this morning. I pray that our paths will meet again.
Update & Request for Prayer: July 2, 2010
For those of you who prayed today for my PICC line removal to be a success, I thank you. It is out and intact and I had very little bleeding – all answers to my prayer requests. Please continue to pray that it does not develop an infection. My daughter, Stephanie, who has almost earned her Masters degree as a Nurse Practitioner, took me. Thanks, Steph!
My cough continues. Perplexing and puzzling to my physicians and me, we will have to continue to be medical sleuths to determine its cause. Fungal cultures from last week’s bronchoscopy “might” reveal some clues in 4-6 weeks. Sigh. My NIH oncologist suggested that the leukemia might be infiltrating my lungs. If we had considered that possibility last week, a sample of lung tissue could have been removed during the biopsy to determine if the leukemia was present. I believe everything happens for a reason and a purpose, so I will try not to second-guess myself and wish that the biopsy had occurred – that would have increased the risks of the procedure, so I will accept it was God’s will that a tissue sample was not removed.
I will write more in another blog update about our blessed visit by my NIH oncologist this week. What an amazing individual, physician and researcher, Dr. M. is! We enjoyed his presence and update on recent updates on treatments and other considerations. When I asked him if I had made a poor decision when I declined treatment with Revlimid earlier this year, he said definitely not and that he was not impressed with the drug’s performance. Revlimid was the drug that had been recommended in 2009 and I declined it after much prayer. It was re-recommended in early 2010 and I felt that if God had directed my paths away from the drug the previous year, that He would not change His mind. He always knows best, doesn’t he?
Dr. M. also suggested that the great tumor load that I am carrying right now could be adding to my infection rate as much as the degree of immune suppression. He believes that treatment might be in order again, very soon. For the ten thousand dollar question – what treatment can I survive? Please pray for this answer to be made crystal clear for me by the Holy Spirit. If the decision is made to resume chemotherapy/immune therapy, it will probably be very soon since we try to time treatment outside of the winter months due to increased risks of flu and other infections.
Thank you for your continued prayers. Happy Birthday, America!
My cough continues. Perplexing and puzzling to my physicians and me, we will have to continue to be medical sleuths to determine its cause. Fungal cultures from last week’s bronchoscopy “might” reveal some clues in 4-6 weeks. Sigh. My NIH oncologist suggested that the leukemia might be infiltrating my lungs. If we had considered that possibility last week, a sample of lung tissue could have been removed during the biopsy to determine if the leukemia was present. I believe everything happens for a reason and a purpose, so I will try not to second-guess myself and wish that the biopsy had occurred – that would have increased the risks of the procedure, so I will accept it was God’s will that a tissue sample was not removed.
I will write more in another blog update about our blessed visit by my NIH oncologist this week. What an amazing individual, physician and researcher, Dr. M. is! We enjoyed his presence and update on recent updates on treatments and other considerations. When I asked him if I had made a poor decision when I declined treatment with Revlimid earlier this year, he said definitely not and that he was not impressed with the drug’s performance. Revlimid was the drug that had been recommended in 2009 and I declined it after much prayer. It was re-recommended in early 2010 and I felt that if God had directed my paths away from the drug the previous year, that He would not change His mind. He always knows best, doesn’t he?
Dr. M. also suggested that the great tumor load that I am carrying right now could be adding to my infection rate as much as the degree of immune suppression. He believes that treatment might be in order again, very soon. For the ten thousand dollar question – what treatment can I survive? Please pray for this answer to be made crystal clear for me by the Holy Spirit. If the decision is made to resume chemotherapy/immune therapy, it will probably be very soon since we try to time treatment outside of the winter months due to increased risks of flu and other infections.
Thank you for your continued prayers. Happy Birthday, America!
Subscribe to:
Posts (Atom)