Another six hours of IV's today - Day 21. I was desensitized again to the Tobramycin and that went well. Not surprisingly, we did not receive the ID's on the organisms from the lab.
I had a difficult overnight - coughing, shortness of breath, and oxygen levels in the 80s.
I am doing some research on oil of oregano - it has antifungal and antibacterial properties. I have nothing to lose - I have had infections for 13 months, with the last four months having been non-stop IV's and hospital trips. My theory is that I could mix the oil of oregano in sterile water and then inhale it through a steam inhaler - thus reaching my sinuses and lungs.
I am also investigating colloidal silver, pau d' arco and apple cider vinegar. If anyone else has an idea as to what I can inhale up my nose to eliminate these infections, drop me a line! Smile.
Thursday, September 30, 2010
Wednesday, September 29, 2010
I Need A "Miracle"
As Lil Man has been stating that he is praying for a "miracle" for Grammy, I must agree with him that a miracle is certainly in order.
Today was an eleven hour marathon of medical interventions. I had a challenging night - oxygen levels declining, cough, and the continued pain through my left lung/ribcage. I spoke with my doctor early this morning and she said to meet her at the office and she would see me before she began seeing her other patients. Fortunately, Kevin had taken the day off today, so he and Lil Man were Grammy's chauffeurs. My doctor found bruising and what appears to be two fractured ribs (from coughing) causing the left lung/rib pain. To be certain that I did not have a blood clot in my lung, she ordered a D-dimer test. This test, when negative, can assure us that I do not have a blood clot anywhere. If the results return positive, then there is a chance of a blood clot and a nuclear scan is required to clarify.
After stopping for breakfast at Lil Man's favorite, IHOP, we left there and my chauffeurs left me off at the cancer center for my IV treatment and to have the D-Dimer test performed. My PICC site is a bit red and inflammed, so it had to be redressed and antibiotics added to the site. Grampy and Lil Man had a great day of shopping, riding rides at the mall, and eating cookies at the cookie shop. At the end of the IV, the D-dimer results returned NEGATIVE! Thank You, Lord for this answer to prayer. I certainly didn't need to confront a blood clot in my lung right now.
My doctor called me back and told me that she wanted me to return to the ENT specialist and have the sinus endoscope performed again to obtain samples. The chauffeurs dropped me off there and went off for some more Grampy-Grandson fun. I knew the doctor was graciously trying to fit me into their already crammed schedule today and I ended up waiting for over 3 hours. I was just exhausted waiting and feeling so lousy.
A bit before six, I finally had the endoscope performed. Immediately, the doctor told me my sinuses were full of infection. I wanted to cry. How after months of IV, oral, intranasal antibiotics, antifungals, and antivirals can I still be battling infection? Never take your own immune system for granted. Guard it and pamper it with all your might because when it is damaged and non-existent, I can assure you that your life will be unbearable.
The ENT gathered samples using the endoscope and when he finished he even tried to suction infection from my sinuses. He has never done that before, so the infection must be extensive. Kevin and I dropped off the samples at the hospital laboratory (who likes to make errors on most of my tests) and now we wait.
Please pray that the lab will provide accurate, timely results for us. Please pray that the infection is sensitive and not resistant to some drug. Please pray for the cough and rib pain to lessen so that I can rest. Please pray for endurance for my family and me as we run this medical marathon.
Today was an eleven hour marathon of medical interventions. I had a challenging night - oxygen levels declining, cough, and the continued pain through my left lung/ribcage. I spoke with my doctor early this morning and she said to meet her at the office and she would see me before she began seeing her other patients. Fortunately, Kevin had taken the day off today, so he and Lil Man were Grammy's chauffeurs. My doctor found bruising and what appears to be two fractured ribs (from coughing) causing the left lung/rib pain. To be certain that I did not have a blood clot in my lung, she ordered a D-dimer test. This test, when negative, can assure us that I do not have a blood clot anywhere. If the results return positive, then there is a chance of a blood clot and a nuclear scan is required to clarify.
After stopping for breakfast at Lil Man's favorite, IHOP, we left there and my chauffeurs left me off at the cancer center for my IV treatment and to have the D-Dimer test performed. My PICC site is a bit red and inflammed, so it had to be redressed and antibiotics added to the site. Grampy and Lil Man had a great day of shopping, riding rides at the mall, and eating cookies at the cookie shop. At the end of the IV, the D-dimer results returned NEGATIVE! Thank You, Lord for this answer to prayer. I certainly didn't need to confront a blood clot in my lung right now.
My doctor called me back and told me that she wanted me to return to the ENT specialist and have the sinus endoscope performed again to obtain samples. The chauffeurs dropped me off there and went off for some more Grampy-Grandson fun. I knew the doctor was graciously trying to fit me into their already crammed schedule today and I ended up waiting for over 3 hours. I was just exhausted waiting and feeling so lousy.
A bit before six, I finally had the endoscope performed. Immediately, the doctor told me my sinuses were full of infection. I wanted to cry. How after months of IV, oral, intranasal antibiotics, antifungals, and antivirals can I still be battling infection? Never take your own immune system for granted. Guard it and pamper it with all your might because when it is damaged and non-existent, I can assure you that your life will be unbearable.
The ENT gathered samples using the endoscope and when he finished he even tried to suction infection from my sinuses. He has never done that before, so the infection must be extensive. Kevin and I dropped off the samples at the hospital laboratory (who likes to make errors on most of my tests) and now we wait.
Please pray that the lab will provide accurate, timely results for us. Please pray that the infection is sensitive and not resistant to some drug. Please pray for the cough and rib pain to lessen so that I can rest. Please pray for endurance for my family and me as we run this medical marathon.
Tuesday, September 28, 2010
My Battle Cry
Tonight I have been reflecting on examples in the Bible - where the battle was fierce and seemingly impossible to win - and what God's children did to turn the tide on such defeating odds and situations. God's children are never underdogs. We have the victory through Christ Jesus! Why should this mere "bump in the leukemia battle" be any different for me? Isaiah 42:13 states: "The LORD will march out like a mighty man, like a warrior he will stir up his zeal; with a shout he will raise the battle cry and will triumph over his enemies."
I decided that I need a battle cry to stand upon during this time. When in battle, battle cries were shouted in an attempt to convince the enemies that their defeat was imminent and that nothing could compare to their own strength and might. Such is the case for me (and all believers) - I shout this battle cry tonight - the words of In Christ Alone as my battle cry. It is my prayer that the enemy of my soul will hear them loud and clear. That his plans to steal my physical strength and life will be thwarted. That he will know that God Alone is in control of my situation, no matter how daunting it appears, and that I will win the victory.
Take a moment to watch this video. It is life-changing: http://www.youtube.com/watch?v=8welVgKX8Qo&feature=related
Watch for the lady reaching for the hem of Christ's garment, seeking healing (Mark 5:25-36). I especially embrace these lyrics:
No guilt in life, no fear in death
This is the power of Christ in me
From life's first cry to final breath
Jesus commands my destiny
No power of hell, no scheme of man,
Can ever pluck me from His hand
Till He returns or calls me home;
Here in the power of Christ I'll stand.
My Battle Cry: In Christ Alone
In Christ alone my hope is found
He is my light, my strength, my song
This cornerstone, this solid ground
Firm through the fiercest drought and storm
What heights of love, what depths of peace
When fears are stilled, when strivings cease.
My Comforter, my All in All
Here in the love of Christ I stand
In Christ alone my hope is found
He is my light, my strength, my song
This cornerstone, this solid ground
Firm through the fiercest drought and storm
What heights o f love, what depths of peace
Where fears are stilled, where strivings cease
My Comforter, my All in All,
Here in the love of Christ I stand
In Christ alone, who took on flesh
Fullness of God in helpless babe
This gift of love and righteousness
Scorned by the ones He came to save
Till on that cross as Jesus died
The wrath of God was satisfied
For every sin on Him was laid
Here in the death of Christ I live
There in the ground His body lay
Light of the world by darkness slain.
Then bursting forth in glorious day
Up from the grave He rose again
And as He stands in victory
Sin's curse has lost its grip on me
For I am His and He is mine
Bought with the precious blood of Christ
No guilt in life, no fear in death
This is the power of Christ in me
From life's first cry to final breath
Jesus commands my destiny
No power of hell, no scheme of man,
Can ever pluck me from His hand
Till He returns or calls me home;
Here in the power of Christ I'll stand.
I decided that I need a battle cry to stand upon during this time. When in battle, battle cries were shouted in an attempt to convince the enemies that their defeat was imminent and that nothing could compare to their own strength and might. Such is the case for me (and all believers) - I shout this battle cry tonight - the words of In Christ Alone as my battle cry. It is my prayer that the enemy of my soul will hear them loud and clear. That his plans to steal my physical strength and life will be thwarted. That he will know that God Alone is in control of my situation, no matter how daunting it appears, and that I will win the victory.
Take a moment to watch this video. It is life-changing: http://www.youtube.com/watch?v=8welVgKX8Qo&feature=related
Watch for the lady reaching for the hem of Christ's garment, seeking healing (Mark 5:25-36). I especially embrace these lyrics:
No guilt in life, no fear in death
This is the power of Christ in me
From life's first cry to final breath
Jesus commands my destiny
No power of hell, no scheme of man,
Can ever pluck me from His hand
Till He returns or calls me home;
Here in the power of Christ I'll stand.
My Battle Cry: In Christ Alone
In Christ alone my hope is found
He is my light, my strength, my song
This cornerstone, this solid ground
Firm through the fiercest drought and storm
What heights of love, what depths of peace
When fears are stilled, when strivings cease.
My Comforter, my All in All
Here in the love of Christ I stand
In Christ alone my hope is found
He is my light, my strength, my song
This cornerstone, this solid ground
Firm through the fiercest drought and storm
What heights o f love, what depths of peace
Where fears are stilled, where strivings cease
My Comforter, my All in All,
Here in the love of Christ I stand
In Christ alone, who took on flesh
Fullness of God in helpless babe
This gift of love and righteousness
Scorned by the ones He came to save
Till on that cross as Jesus died
The wrath of God was satisfied
For every sin on Him was laid
Here in the death of Christ I live
There in the ground His body lay
Light of the world by darkness slain.
Then bursting forth in glorious day
Up from the grave He rose again
And as He stands in victory
Sin's curse has lost its grip on me
For I am His and He is mine
Bought with the precious blood of Christ
No guilt in life, no fear in death
This is the power of Christ in me
From life's first cry to final breath
Jesus commands my destiny
No power of hell, no scheme of man,
Can ever pluck me from His hand
Till He returns or calls me home;
Here in the power of Christ I'll stand.
"Jesus Calling" by 33 Miles
I mentioned some of these lyrics in the post I wrote on the day I had the last PICC line inserted. As I was listening to my favorite Christian radio station through my ear buds on the cath lab table, this song played and comforted me. Tonight, I heard it play again and wanted to post a link to the song and the share these lyrics. Be encouraged!
Link to Video: http://www.youtube.com/watch?v=hBuvALWvmtk&feature=related
What do you see when you look at your world today
Is it so full of clutter that you feel like you’re going insane
And you can’t fight back cause you’re just too afraid
And it seems like the clouds in your sky don’t wanna change
You see there’s always another story, another side to every coin
And how you see your circumstance is all about a choice
CHORUS
When you see the rushing wind, feel the pouring rain
Hear the thunder now as the clouds roll in
You’re blinded by the lightning
Do you also hear that still, small voice saying
It’s okay you’re not alone
You may be scared to death but I won’t let you go
You may think the sky above is falling
But can you hear Jesus calling
What do you see when you look at your world today
Do you see a glimmer of hope, or has it all turned to gray
Well start by counting your blessings one by one
Oh and I’m sure right there, you’ll start to see the sun
You see there’s always another story, another side to every coin
And how you see your circumstance is all about a choice
CHORUS
Because the darker the night, the brighter He can shine
Link to Video: http://www.youtube.com/watch?v=hBuvALWvmtk&feature=related
What do you see when you look at your world today
Is it so full of clutter that you feel like you’re going insane
And you can’t fight back cause you’re just too afraid
And it seems like the clouds in your sky don’t wanna change
You see there’s always another story, another side to every coin
And how you see your circumstance is all about a choice
CHORUS
When you see the rushing wind, feel the pouring rain
Hear the thunder now as the clouds roll in
You’re blinded by the lightning
Do you also hear that still, small voice saying
It’s okay you’re not alone
You may be scared to death but I won’t let you go
You may think the sky above is falling
But can you hear Jesus calling
What do you see when you look at your world today
Do you see a glimmer of hope, or has it all turned to gray
Well start by counting your blessings one by one
Oh and I’m sure right there, you’ll start to see the sun
You see there’s always another story, another side to every coin
And how you see your circumstance is all about a choice
CHORUS
Because the darker the night, the brighter He can shine
Update & Request for Prayer: September 28, 2010
I am home from another day's treatment. My friend Shelly took me today so that Dad, my daily taxi driver, could have a break. I cannot believe how weak I am growing. I awoke with sharp pains through my left lung. I have felt this type of pain on 3 different occasions....once with pneumonia; once with a blood clot in my lung; and once when I broke ribs from coughing so hard. Please pray the pain is not from pneumonia or a blood clot. I probably should have gone and had it checked tonight but I am just too tired. I will see my doctor tomorrow afternoon and will go in the morning for my IV treatment.
Monday, September 27, 2010
An Update & Request for Prayer: September 27, 2010
My breathing and coughing worsened more and more last night. We debated a trip to the hospital but my body revolts at the thought of another hospital admission. We realized that over the weekend that I began struggling to breathe more and more during the IV's and for several hours after the IV. Overnight I began contemplating if it could be possible that the actual IV antifungal being used to clear the fungal pulmonary infection could be contributing to these difficulties.
I called my doctor first thing this morning. After discussing my worsening condition, I asked her it if could be possible that since I am receiving double the dose of this drug than I have ever taken before, if it could still be inducing a long-term type of anaphylactic drug reaction, thus all of the coughing and shortness of breath? We decided it would be worth a trial run of returning to my 50 mg/ml dose (versus 100 mg/ml) for a few days. If the symptoms continue to worsen with the lower dose, we would know that the infection versus the drug is more likely the cause of my problems.
I received my IV today and it is now almost 6 hours post-IV and I have had very little coughing and wheezing compared to the past week or so. Possibly, we are onto something! I am so hopeful because it is quite discouraging to go through all of these IV's with harsh medications and just continue to worsen.
I have had a bad sinus headache with pressure behind my eyes today, so we will need to consider if another endoscope of the sinuses needs to be performed to obtain more samples. Fevers continue and I just feel rather lousy overall.
The tip where my PICC line inserts into my arm was a bit red today when the dressing was changed. Please pray that this is not the beginning of yet another infection.
Although, I am not considered technically neutropenic (neutrophils under 1500), my doctors decided today to petition the insurance to pay for an additional five days of Neupogen injections to offer additional protection as I battle these serious infections. Thankfully, BCBS agreed and I received the first of five shots this afternoon. My body's immune system needs all of the help it can get these days!
I am researching some herbal options for treatment of fungal infections. I will update about what herbs I decide to use at a later time.
I have been compiling a chart for my Infectious Disease doctor to review. It spans the dates of June 1 - today, September 27. I think if he can see what drugs I used when; when symptoms improved or worsened; and other factors such as labs, temperatures, etc., he might be able to detect a pattern that could help us to resolve this cycle.
I wanted to cry as I worked on the chart. It has been almost 4 months and almost everyday - over 120 days-I have been at doctors, hospitals, receiving IV's, ill, running fevers, and fighting for my life. To see all of this written out on paper was striking and I must admit, a bit discouraging.
Please pray for a breakthrough for me. I know my family is as weary as I am as we wade through these days turned into weeks turned into months of infections and leukemia challenges.
I called my doctor first thing this morning. After discussing my worsening condition, I asked her it if could be possible that since I am receiving double the dose of this drug than I have ever taken before, if it could still be inducing a long-term type of anaphylactic drug reaction, thus all of the coughing and shortness of breath? We decided it would be worth a trial run of returning to my 50 mg/ml dose (versus 100 mg/ml) for a few days. If the symptoms continue to worsen with the lower dose, we would know that the infection versus the drug is more likely the cause of my problems.
I received my IV today and it is now almost 6 hours post-IV and I have had very little coughing and wheezing compared to the past week or so. Possibly, we are onto something! I am so hopeful because it is quite discouraging to go through all of these IV's with harsh medications and just continue to worsen.
I have had a bad sinus headache with pressure behind my eyes today, so we will need to consider if another endoscope of the sinuses needs to be performed to obtain more samples. Fevers continue and I just feel rather lousy overall.
The tip where my PICC line inserts into my arm was a bit red today when the dressing was changed. Please pray that this is not the beginning of yet another infection.
Although, I am not considered technically neutropenic (neutrophils under 1500), my doctors decided today to petition the insurance to pay for an additional five days of Neupogen injections to offer additional protection as I battle these serious infections. Thankfully, BCBS agreed and I received the first of five shots this afternoon. My body's immune system needs all of the help it can get these days!
I am researching some herbal options for treatment of fungal infections. I will update about what herbs I decide to use at a later time.
I have been compiling a chart for my Infectious Disease doctor to review. It spans the dates of June 1 - today, September 27. I think if he can see what drugs I used when; when symptoms improved or worsened; and other factors such as labs, temperatures, etc., he might be able to detect a pattern that could help us to resolve this cycle.
I wanted to cry as I worked on the chart. It has been almost 4 months and almost everyday - over 120 days-I have been at doctors, hospitals, receiving IV's, ill, running fevers, and fighting for my life. To see all of this written out on paper was striking and I must admit, a bit discouraging.
Please pray for a breakthrough for me. I know my family is as weary as I am as we wade through these days turned into weeks turned into months of infections and leukemia challenges.
Sunday, September 26, 2010
An Update & Request for Prayer: September 26, 2010
I am back home from the hospital, having received my treatments at the hospital on Saturday and Sunday. Yesterday, I completed the cycle of Tobramycin but continue on the antifungal. I have felt so lousy and my problems breathing, coughing, and malaise continue.
I anticipate that we will know more tomorrow or Tuesday, once my family doctor consults with the infectious disease doctor again. One of my respected leukemia advisers told me that the silver stain stating "Acute Inflammation" indicates pneumonia in my lungs. Today, my temperature was slightly lower and although I continue to cough and wheeze, I see a minute improvement today. Unfortunately, my white blood count jumped by 20,000 since yesterday. This makes us suspect a worsening of infection. I know the dark, damp lungs provide just the environment that molds and fungi desire. Work, medicines, work!
My kidney function is improving but now my liver enzymes are elevated. I am blessed that my other organs are all in good working order as they attempt to flush and filter so many harsh medications.
My PICC line is performing flawlessly and is not as painful as the last PICC. Please continue to pray that I do not get an infection in my bloodstream from the PICC. Lil Man must not like this contraption on Grammy's arm - he points to my PICC line and says, "Cut it out!"
I return to the cancer center Monday through Friday for the IV's and then will repeat the next weekend back at the hospital. I still have a long, long treatment road ahead of me -- 12 more days at the least.
My friend Sarah discovered a couple of books with encouraging integrative cancer information and she purchased those for me and I anticipate delivery tomorrow! I will have some new reading material to occupy my IV time. Thank you for thinking of me, Sarah.
I anticipate that we will know more tomorrow or Tuesday, once my family doctor consults with the infectious disease doctor again. One of my respected leukemia advisers told me that the silver stain stating "Acute Inflammation" indicates pneumonia in my lungs. Today, my temperature was slightly lower and although I continue to cough and wheeze, I see a minute improvement today. Unfortunately, my white blood count jumped by 20,000 since yesterday. This makes us suspect a worsening of infection. I know the dark, damp lungs provide just the environment that molds and fungi desire. Work, medicines, work!
My kidney function is improving but now my liver enzymes are elevated. I am blessed that my other organs are all in good working order as they attempt to flush and filter so many harsh medications.
My PICC line is performing flawlessly and is not as painful as the last PICC. Please continue to pray that I do not get an infection in my bloodstream from the PICC. Lil Man must not like this contraption on Grammy's arm - he points to my PICC line and says, "Cut it out!"
I return to the cancer center Monday through Friday for the IV's and then will repeat the next weekend back at the hospital. I still have a long, long treatment road ahead of me -- 12 more days at the least.
My friend Sarah discovered a couple of books with encouraging integrative cancer information and she purchased those for me and I anticipate delivery tomorrow! I will have some new reading material to occupy my IV time. Thank you for thinking of me, Sarah.
Friday, September 24, 2010
A Part of God's Plan
If you have dealt extensively with your medical insurance carrier, you probably know that they do not always have your best interests at heart. After all, they are a business and the bottom line for businesses is that their bottom line is in the black and not in the red! It doesn't seem proper or even humane for an insurance company to make decisions contrary to the recommendations of a patient's physician, yet that occurs frequently.
Quite some time ago, my insurance carrier decided to assign an insurance case manager to "assist" me. Having played this "medical game" for many years, I immediately became pessimistic and paranoid about their willingness to do anything that would benefit me. You might say I developed an attitude and was not overly delighted at the prospect of an insurance appointed individual deciding what treatments, drugs and tests I could or could not receive.
I should have known that God was not going to forsake me even in the midst of an insurance conglomerate. This summer my previous case manager, Melanie, had surgery and my care was transitioned to DeAnn. Melanie had helped me a great deal but unfortunately for DeAnn, she walked into my situation at the beginning of summer when my medical journey took a sharp detour. DeAnn has worked tirelessly on my behalf to insure that I receive the drugs, tests, and hospital authorizations in a timely fashion. She has advocated for me and is currently lobbying for the insurance to begin covering my milk. Can you imagine anyone working two weeks to obtain coverage for 150 syringes? DeAnn precisely did that for me. And in the midst of precertifications, telephone calls, e-mails, and I imagine paperwork galore, DeAnn remains human and compassionate. She tells me she is praying for me.
God intervenes in the smaller details of our lives. I believe that He has assigned this case worker to me so that the burdens of logistically coordinating my care is lessened. Thank you, DeAnn!
Quite some time ago, my insurance carrier decided to assign an insurance case manager to "assist" me. Having played this "medical game" for many years, I immediately became pessimistic and paranoid about their willingness to do anything that would benefit me. You might say I developed an attitude and was not overly delighted at the prospect of an insurance appointed individual deciding what treatments, drugs and tests I could or could not receive.
I should have known that God was not going to forsake me even in the midst of an insurance conglomerate. This summer my previous case manager, Melanie, had surgery and my care was transitioned to DeAnn. Melanie had helped me a great deal but unfortunately for DeAnn, she walked into my situation at the beginning of summer when my medical journey took a sharp detour. DeAnn has worked tirelessly on my behalf to insure that I receive the drugs, tests, and hospital authorizations in a timely fashion. She has advocated for me and is currently lobbying for the insurance to begin covering my milk. Can you imagine anyone working two weeks to obtain coverage for 150 syringes? DeAnn precisely did that for me. And in the midst of precertifications, telephone calls, e-mails, and I imagine paperwork galore, DeAnn remains human and compassionate. She tells me she is praying for me.
God intervenes in the smaller details of our lives. I believe that He has assigned this case worker to me so that the burdens of logistically coordinating my care is lessened. Thank you, DeAnn!
Persevere: Hebrews 10:35-36
"So do not throw away your confidence;
it will be richly rewarded.
You need to persevere
so that when you have done the will of God,
you will receive what he has promised."
it will be richly rewarded.
You need to persevere
so that when you have done the will of God,
you will receive what he has promised."
Do Things Usually Grow Worse Before They Improve?
Overnight and today, I worsened. I was awake coughing and wheezing most of the night and it continued today. My temperature raised and my oxygen saturation levels declined. My team of doctors - family doctor, oncologist, and infectious disease doctor - all worked tirelessly to help me. My oncology nurses are three wonderful women who help me everyday. How can I ever thank people for trying to save my life?
The Infectious Disease doctor said if I continue to deteriorate, I will have to be readmitted to ICU. We are going hour by hour, watching for signs of improvement or worsening. I received both IV's today and then left and had a chest x-ray at the end of the day. It did not show worsening on the x-ray. However, one of the tests that was ordered on Monday (a silver stain) returned and showed: "Acute Inflammation. Abundant Bacteria" present in my lungs. Abundant bacteria is not the term I had hoped to read, given the many antimicrobials I am taking - oral and IV.
The fungus was identified, but yet again, the lab made a critical error and did not perform the sensitivities - so we still do not know what drugs this fungus will respond to, which is vital information for us to know. The negligent performance of this lab is inexcusable. For the sake of myself and other ill patients, I must once again file complaints and draw attention to these errors. People's lives rely upon accurate laboratory findings. I have asked my insurance to consider coverage for my cultures at another lab. This is an example of why and how we must be vigilant patient advocates for ourselves when we are ill. No one is going to look out for us like we look out for ourselves.
I will return to the hospital on Saturday and Sunday for my IV's. My family doctor also wants labs drawn both days to keep an eye on all of my counts and my kidney function.
Please continue praying for these infections to resolve; for the medications to help me and not to harm me; for my blood counts to improve; for my breathing to improve; for my strength to return; for my faith to remain strong; and for all of my family to be given extra strength as they help me.
The Infectious Disease doctor said if I continue to deteriorate, I will have to be readmitted to ICU. We are going hour by hour, watching for signs of improvement or worsening. I received both IV's today and then left and had a chest x-ray at the end of the day. It did not show worsening on the x-ray. However, one of the tests that was ordered on Monday (a silver stain) returned and showed: "Acute Inflammation. Abundant Bacteria" present in my lungs. Abundant bacteria is not the term I had hoped to read, given the many antimicrobials I am taking - oral and IV.
The fungus was identified, but yet again, the lab made a critical error and did not perform the sensitivities - so we still do not know what drugs this fungus will respond to, which is vital information for us to know. The negligent performance of this lab is inexcusable. For the sake of myself and other ill patients, I must once again file complaints and draw attention to these errors. People's lives rely upon accurate laboratory findings. I have asked my insurance to consider coverage for my cultures at another lab. This is an example of why and how we must be vigilant patient advocates for ourselves when we are ill. No one is going to look out for us like we look out for ourselves.
I will return to the hospital on Saturday and Sunday for my IV's. My family doctor also wants labs drawn both days to keep an eye on all of my counts and my kidney function.
Please continue praying for these infections to resolve; for the medications to help me and not to harm me; for my blood counts to improve; for my breathing to improve; for my strength to return; for my faith to remain strong; and for all of my family to be given extra strength as they help me.
Thursday, September 23, 2010
My Home Away from Home
However, this photo represents a large part of my life - sitting in my chemo chair at the cancer center with IV medications and cancer drugs infusing into my veins. Fighting infectious and cancerous foes - unseen yet formidable - all from the comfort of a recliner!
Yesterday, my oldest daughter stopped by to visit. She snapped this photograph with her cell phone (not the clearest of photos). If you look closely on the wall behind me, the framed photo is the same photo that graces the top of my blog. This was one of four of my photos that was chosen to be enlarged and framed for the new cancer center. Most days, I stay in this, "The Stacie Room".
How Much More Can She Take?
How much can a human body and mind endure? Some have asked this question of me lately. Granted, my life is full to overflowing with suffering and difficulties. Yet when I reflect on the suffering of my Savior and other heroes of the faith, I am ashamed to even consider that I am suffering.
The Apostle Paul's New Testament writings always inspire me. And when we consider Paul's life and the suffering he endured for the cause of Christ and how brightly his life, testimony, and writings shined despite his life challenges, our spirits should be inspired. No matter if our life circumstances are not as we had hoped or dreamed or if the pain (either physical, emotional or relational) is seemingly unbearable, through each situation we should be seeking God and asking Him how we can bring glory to Him and His Kingdom through our trials. We should strive to know God more deeply and His Word more intimately.
Flogged. Beaten. Shipwrecked. As I read and reread the Book of Acts, I am poignantly struck at how insignificant most of our sufferings as modern day Christians are when compared to what Paul and other Christian martyrs have endured.
For most modern day Christians who don't have a prayer answered according to THEIR will, in THEIR timing or who face some "light and momentary troubles" such as illness, relational challenges or financial concerns, they are ready to toss in the spiritual towel. Give up. Quit. And just blame God and become angry and bitter.
We will benefit by following the persevering attitude of Paul. Amidst his beatings, being shipwrecked, and persecution, Paul witnessed to all about Christ. The words he penned in his New Testament writings continue to breathe life and hope into those who read the words ages later.
Today may we each consider if we have become fair weathered, mountaintop Christians - only praising, serving and acknowledging God when life is playing out on OUR own terms and life is good. If so, we need to do a life reassessment and realize that during the valleys of life - when we are suffering so deeply we sense that our body will fail or our souls will collapse - we need to imitate Paul and be the most serious about our efforts to witness to God's goodness and His plan of salvation to each lost soul.
So often the most broken vessel is of immense value to the Kingdom .......
Paul wrote in 2 Timothy:
But you have carefully followed my doctrine, manner of life, purpose, faith, longsuffering, love, perseverance, persecutions, afflictions, which happened to me at Antioch, at Iconium, at Lystra—what persecutions I endured. And out of them all the Lord delivered me. Yes, and all who desire to live godly in Christ Jesus will suffer persecution.
The Apostle Paul's New Testament writings always inspire me. And when we consider Paul's life and the suffering he endured for the cause of Christ and how brightly his life, testimony, and writings shined despite his life challenges, our spirits should be inspired. No matter if our life circumstances are not as we had hoped or dreamed or if the pain (either physical, emotional or relational) is seemingly unbearable, through each situation we should be seeking God and asking Him how we can bring glory to Him and His Kingdom through our trials. We should strive to know God more deeply and His Word more intimately.
Flogged. Beaten. Shipwrecked. As I read and reread the Book of Acts, I am poignantly struck at how insignificant most of our sufferings as modern day Christians are when compared to what Paul and other Christian martyrs have endured.
For most modern day Christians who don't have a prayer answered according to THEIR will, in THEIR timing or who face some "light and momentary troubles" such as illness, relational challenges or financial concerns, they are ready to toss in the spiritual towel. Give up. Quit. And just blame God and become angry and bitter.
We will benefit by following the persevering attitude of Paul. Amidst his beatings, being shipwrecked, and persecution, Paul witnessed to all about Christ. The words he penned in his New Testament writings continue to breathe life and hope into those who read the words ages later.
Today may we each consider if we have become fair weathered, mountaintop Christians - only praising, serving and acknowledging God when life is playing out on OUR own terms and life is good. If so, we need to do a life reassessment and realize that during the valleys of life - when we are suffering so deeply we sense that our body will fail or our souls will collapse - we need to imitate Paul and be the most serious about our efforts to witness to God's goodness and His plan of salvation to each lost soul.
So often the most broken vessel is of immense value to the Kingdom .......
Paul wrote in 2 Timothy:
But you have carefully followed my doctrine, manner of life, purpose, faith, longsuffering, love, perseverance, persecutions, afflictions, which happened to me at Antioch, at Iconium, at Lystra—what persecutions I endured. And out of them all the Lord delivered me. Yes, and all who desire to live godly in Christ Jesus will suffer persecution.
An Update & Request for Prayer: September 23, 2010
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.
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.
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.
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