Monday, June 28, 2010

My Help Comes from the Lord

If a song title reflects my current journey of health challenges, this song title is it - My Help Comes from the Lord - by The Museum (Words and Music by Jon Abel, Barry Weeks, Tony Wood and Bryan Brown). I am only walking these daily steps with illness, daily treatments, and leukemia with His help.


When sorrows come and hope seems gone
You’re the Rock I rest upon
When waters rise and I can’t breathe
You’re the love that rescues me

Out of the darkness
I lift up my eyes
Unto the hills
I feel my faith rise


Maker of heaven, giver of life
You are my strength, my song in the night
My refuge, my shelter
Now and forevermore
My help comes from the Lord

When I’m broken, scarred by sin
Death gives way to life again
When I suffer, when I’m bound
In You I’m free, in You I’m found

Out of the darkness
I lift up my eyes
Unto the hills
I feel my faith rise


To listen to this song:

Update & Request for Prayer: June 28, 2010

Today I am receiving my eight hour IVIG treatment. I will try to update the blog despite my medication hazed brain. I received my IV treatments on Saturday and Sunday at the hospital. All twenty-one days' treatments are now infused. However, I have had a really bad few days - probably the worst since being admitted to ICU three weeks ago today. Cough worsening, blood coming out of the sinuses, fever, bad headache, and no energy. My WBC has increased by over 300% since I was admitted to the hospital. This is another indicator that either an infection is not being cleared or the leukemia is rearing its ugly head again.

A praise to report though - on Saturday we learned that the bronchoscopy cultures had revealed I DO NOT HAVE PCP ~ p carnii pneumonia. This is the life-threatening pneumonia that threatens immune compromised patients. We are awaiting other stains and cultures from last week's two scopes. We had hoped that pathology could review the bronchoscopy and endoscopic samples to see if the leukemia has infiltrated my lungs and/or sinuses. Unfortunately, the slides to do this are different than the slides for culturing, so we could not obtain these answers. We are baffled and puzzled why my symptoms are not improving. My Infectious Disease doctor said with continued worsening of symptoms, that we have to consider that the fungal infections have become resistant to the IVs I have just completed and the oral and intranasal antifungals I continue taking. If that proves to be the case, I will have to take Amphotericin B IV's. Please pray this will not be the case. Amphotericin is a horrible drug to take - it is actually referred to as Ampho-Terrible by patients and physicians alike.

On a positive note - I have been seen by Dr. M., a leukemia specialist at the NCI - National Cancer Institute - (Washington, DC) for over a decade. Early on after my diagnosis, I decided to use leukapheresis to help control my very quickly escalating WBC (it was over 200,000 at that time). I located a paper written by this Dr. M., I contacted him, and we began a long-term doctor-patient relationship that has endured for over a decade. I cannot believe that I have outlived his career as his retirement from the NIH will occur this week.

He has treated me and known our girls since they were young pre-teens. While I was still in ICU, he e-mailed me and told me that he will be traveling from DC to Iowa to visit family and that he wanted to come to our home to visit. I told him what a house call that is for a doctor to make. So we are eagerly looking forward to Dr. M. arriving mid-week. In May 2009 when I returned to the NIH, Dr. M. had the unfortunate task to tell Kevin and me that I was "end stage CLL". When we left the NIH, I didn't think we would ever get to see Dr. M. again - but God has kept me alive and kicking and now we will have the honor of his presence at our home. Is that an amazing doctor or what? :-)

I remembered I had not updated on the bronchoscopy and sedation. Most of you know that I am never sedated for procedures because of my drug reactions risks. I just bite the bullet, face the pain and endure what I have to endure. For patients like me who do not use alcohol, drugs and pain medications/sedations, sedation can really mess us up. Such was the case last Thursday with my bronchoscopy. I declined the two sedatives before going to the procedure room and told them if I could endure it, I would prefer not to be sedated at all. I began coughing a lot midway through the procedure, so I had to be given a small amount of sedation. Now I will be harassed about the outcome of that sedation for years to come.

As soon as the pulmonologist brought Kevin back to see me, he told Kevin that he had never performed a bronchoscopy with the patient talking the entire time. That is a feat in itself to talk with a scope down your throat into your lungs! I had been listening to my MP3 player during the procedure and it is loaded with all of my praise and worship music. I was convinced that there was a song about beer drinking and partying on the MP3 and I couldn't figure out how it had gotten on there. (I have reviewed all my songs and no such song exists, but I was convinced that is what I had listened to during the sedation.)

Kevin said that I was "nuttier than a fruitcake" when I returned to the recovery room. I kept asking him to get a ladder (I guess I was plotting my escape). He said I did a lot of singing - and we all know how poorly I sing! He said I kept trying to call people and he was advising me against that. I told one of our daughters it would take about a year for me to receive the culture results (it often seems as though it takes a year!) And there were a few other escapades. I knew better than to be sedated!

Thank you for your continued prayers.

Friday, June 25, 2010

A Brief Update

I fell quickly and soundly to sleep last night after the IV treatment and bronchoscopy. I AM receiving my IV this morning and am updating from my phone, so this will be brief. I wanted to thank everyone for your prayers during the bronchoscopy. I was at perfect peace and almost completed the bronchoscopy unsedated. YIKES. I began coughing alot and had to receive some sedation to quiet that. Later I will report my comical performance post sedation

Wednesday, June 23, 2010

Urgent Request for Prayer: June 23, 2010

What a day!

I received my IV treatment this morning. I continue to run a temperature and was awake early with nausea and diarrhea from the medications. As I had posted earlier, the plan from yesterday (and my how plans in the world of medicine change) was to schedule the sinus endoscopy and bronchoscopy at the same time on Thursday, so I would be sedated once for two procedures.

As I was receiving my IV this morning, my nurse called and said the ENT wanted a set of sinus x-rays ASAP and that he wanted to perform the scope into my sinuses (to obtain culturing material) today. UGH. I raced from the cancer center to the diagnostic center and had the sinus x-rays performed. I returned home and then two hours later made the round trip again to the ENT's office. He used the endoscope without sedation and went into four openings of my sinuses obtain four sets of culturing material. He predicted it will be Monday before we begin receiving reports.

All of our family came tonight and we celebrated my Mom's 67th Birthday! Happy Birthday, Mom (a day early). I am very, very exhausted. I wish I had just been readmitted to ICU yesterday and I could have been rolled around on my bed to all of these appointments. I learned a valuable lesson during this bout of infections and complications. I am just too ill to be on this nonstop outpatient trip to IV's, tests and procedures.

Tomorrow, I will return for my IV from 10-12. I have to arrive for my bronchoscopy at 1 PM. They are estimating that I will be sedated and undergoing the bronchoscopy from 2:30-4:00 (ET). I never dreamed it would be that lengthy. Then they predict I will recover for 2-4 hours and return home. Then I have to return Friday morning at 9 for another IV (IVs will occur back at the hospital on Saturday and Sunday and my all day IVIG treatment is scheduled for Monday). Of course, any new culture results could change all of these plans.

I truly need God's peace and presence for this procedure. I have my MP3 loaded with my praise and worship music. I am asking that as little sedation as possible be used due to my risks of reactions from the drugs themselves. Please pray that this will go flawlessly. If you have time between 1 and 4 PM (ET) tomorrow, please intercede in prayer for me. Please pray for me to be courageous and bold.

Also, tomorrow, as you pray for me, one of my most trusted leukemia advisors, Dr. Terry, will be admitted and undergoing surgery tomorrow. I told him that I would ask my family and friends to pray for him tomorrow as you pray for me. We are both trusting in our Lord and Savior to bring us through yet another round of medical challenges. He is able.

Request for Prayer

Please pray at 320 today. I will have the sinus scope and/or sinus puncture unsedated. It could not be arranged during tomorrow's bronchoscopy at 1. I continue to run a fever. Will try to update tonight when I am not posting from my phone.

Tuesday, June 22, 2010

Update & Request for Prayer: June 22, 2010

The challenges continue. I returned to outpatient IV treatments yesterday. My lab results revealed that I was (again) neutropenic and I received a Neupogen injection to assist with that concern. My WBC remained quite elevated at 110,000 (Normal WBC being 5000-10,000). This could be an indication that an infection is not being treated.

Dad and Mom (again) took me to receive my IV treatment this morning. I had a bad night last night with a lot of coughing and nausea. My oncology nurse noted this morning that I was coughing more and did not look as though I felt well. This afternoon I realized I was very flushed and sure enough - the fevers had returned. At the request of my doctor, late this afternoon I returned for the second time today to the cancer center. They drew blood cultures (to see if an infection in the bloodstream had originated from my PICC line); performed a urine culture; and other labs. Then I went to the radiology center for a chest x-ray.

My doctor just called me at home (she is an angel). She is very concerned that a fever has developed in the presence of my taking so many antimicrobials (seven). She believes we are now left with no choice but to proceed with a bronchoscopy (scope into my lungs) to gather samples for culturing to determine if we have missed covering any infectious organisms (bacterial, viral or fungal).

It appears that I will most likely be admitted to the hospital on Thursday morning for this procedure. She is also trying to coordinate an endocscopy of my sinuses at the same time so that I do not have to do that unsedated. As many of you know, I am never sedated for anything due to all of the drug reactions that I have experienced. The doctors do not believe that even Stalwart Stacie can endure the bronchoscopy unsedated, These are our prayer requests for tonight.

Please pray for the sedation to go without complication or reaction.
Please pray for the scope to result in providing answers that will help me and that it will not harm me.
Please pray for all of the doctors involved to have wisdom while performing these scopes.
Please pray that the infections will not worsen and that I will not develop septicemia (blood stream infection). I will post more details when they are available.
Please pray that I will have God's peace during these procedures.
Please pray for these infections to begin resolving quickly.
Please pray that I do not develop infections due to the procedures themselves.
Please pray that I will not have any bleeding problems since my platelets are low.

I am so tired and weak. After receiving over two weeks of IV treatments, a week's stay in ICU and everything else that I have experienced over the past two weeks, it is very discouraging to see signs of worsening versus improvement. I will trust Him.

Sunday, June 20, 2010

Update & Request for Prayer: June 20, 2010

I made the transition back to the hospital for IV treatments over the weekend. That went relatively well once pharmacy decided that they could mix the medication by simply pulling up my records from ICU the previous week. Sometimes wading through the entire medical system seems like a maze. With electronic medical files and other tracking systems, one would think that dilemmas as simple as resolving how to mix the same medicine I have been taking for over two weeks would be relatively simple to resolve.

I continue to be weak and not feeling well at all. After two weeks of my stay in the ICU and daily IV's, I had hoped that I would see more signs of improvement. My temperature continues to swing from my low normal temperature to elevated status. The cough and congestion are also present. Today I have had some strong heart palpitations and in general, malaise,

Yesterday, we went for my IV and then I needed to pick up a birthday gift for our daughter (today is her birthday!), Father's Day gifts, and a few other errands. Kevin had to push me in a wheelchair to accomplish all of this and that is very defeating to me. I need strength - God strength - breathed into my crumpling body.

Especially shocking to all of us, when I weighed on Friday, I had lost 17 pounds in 12 days. Granted, I will always welcome weight loss, but I know that this is much too much weight to lose so quickly. The high dose IV steroids have probably contributed to muscle loss and tumor destruction - both possible sources of the weight loss.

Please continue to pray for the IV treatments to proceed without complications - tomorrow my liver and kidney functions will be rechecked as this medicine can be difficult for the liver and kidneys to excrete. I will also have my regular lab work drawn tomorrow to check platelets, hemoglobin and my neutrophil count (to determine if I need a Neupogen injection) and my PICC line's dressing will be changed when it is flushed. I will return to the oncologists' office Monday through Friday for the IV's and then will return to the hospital next weekend for the IV's.

If, by midweek, the fevers, cough and malaise continue, I will most likely be scheduled for the bronchoscopy (scope into my lungs) to obtain samples to be certain PCP is not causing some of these problems. I will also have to have a sinus scope to reculture the sinuses. My best estimate is these will be scheduled at week's end if we don't note improvement. After next weekend IV's, I will have my usual eight hour IVIG treatment on Monday, June 28th. If I have improved, the PICC line will be removed sometime that week.

I appreciate your continued prayers. I am thankful to be alive today to share my youngest daughter's birthday with her and to share Father's Day with my Dad and my husband.

Wednesday, June 16, 2010

PICC Poke: June 16, 2010

It has been another medical marathon day. I left home at 7:45 AM this morning and returned at 6:45 PM. I received my tenth IV infusion of the antifungal today. That is going apparently well, with a bit of nausea and diarrhea attributed to the drug. We are puzzled as my cough continues as does a low grade temperature despite all of these antimicrobials.

Kevin took a vacation day to assist me today. After going for my IV this morning, we drove to Indianapolis and I arrived at the hospital around 1:30 PM. The care was excellent and the PICC (Peripherally Inserted Central Catheter) line insertion procedure went well. It is always difficult to consent to one procedure that has the potential to benefit me yet also has the risk to harm me. This very PICC line could cause an infection in my bloodstream. Please keep this concern as a top matter of prayer over the next two to three weeks.

Since I have experienced all of the drug and contrast dye reactions, I requested that I receive no sedation and no dye for the PICC insertion (just call me stupid, I know). I was taken into the catheter lab and 2 ultrasound technicians, a PICC technician and the radiologist were in attendance. I was placed on a table with an ultrasound device over my chest and an ultrasound wand to the side of the table.

It is at these moments, that I am so thankful that I know a Comforting Father to Whom I can cry out - the loneliness of a procedure room; the fully awake knowledge that a painful procedure is about to occur; the concerns about risks of the procedure ...... all of these thoughts flashed upon the flatscreen of my mind. Immediately, I took a deep breath and began praying. Two Scriptures I repeated over and over:

Psalm 46:10
Be still, and know that I am God........

Hebrews 13:6
So we may boldly say: “The LORD is my helper; I will not fear. What can man do to me?”

The technicians quickly located a very suitable, deep vein (the Basilic vein) in the bicep of my arm. Unfortunately, they told me that the access to the superior vena cava (the large vein that carries blood from the head, neck, arms, and chest to the heart) would be best from my right side. I say unfortunately because I am right handed dominate and I must sleep on my right side (due to my enlarged spleen on the left side) - now very difficult to accomplish with this PICC line running up my right bicep.

With the strength and peace of my Father and no sedation, they made an incision into my bicep and threaded the PICC line/catheter up that vein, through the clavicle area (shoulder blade) and down the vein into my chest to the superior vena cava. This was somewhat uncomfortable and just as the catheter threaded into my chest, my heart must have been displeased and I had some fluttering of my heart and a very strange sensation. I was about to voice my concerns when the radiologist told me that it was in place. They used ultrasound to verify placement and when I looked up to view the screens (just call me curious but I like to see and know what is going on), I could see the fine line transversing through those veins and at the top of every screen, a crystal clear image of my cross was imprinted. It was one of those nice, God-moments that I believe He allowed me to see on that ultrasound view, the PICC line with my cross pictured right above it, as a sign of His reassurance and presence in that room.

Next, the doctor told me that they would begin stitching the PICC line in place with 3-4 stitches. However, they had difficulty with stopping the bleeding. He discussed my platelet issues with me (I have low platelets from the leukemia and platelets clot blood). It took three attempts at pressure before they stopped the bleeding and were able to stitch the line in place. It was dressed (in a nice knit A-line ..... just making sure you were still reading or just scanning this update) .......... and bandaged. I will apply heat to it 3-4 times daily for the next 3 days to help prevent blood clots from forming and we will be meticulous with keeping it clean and dry. It should be ready to use in the morning for my next IV.

Labs will be checked tomorrow, so I am eager to know if improvements have occurred with those. I appreciate your continued prayers. I could sense that many were praying for me this afternoon as I received the PICC line. Thank you for your faithfulness to pray for me, help me and to encourage me.

PS - I really would be a wimp without God on my team!

Tuesday, June 15, 2010

With Every Breath

I enjoyed listening to this song while I was in the hospital last week. Many long nights in ICU, I have passed by listening to praise and worship music. And this admission was no different. On my new phone, with my room only lit by the lights of equipment blinking and bleeping, I could watch my favorite worship videos all through the night. Several times when sleep was elusive, I would pull a video up and before the song ended, I was comforted and transitioning toward sleep.

Everyday holds such beauty and blessings and hope for each man, woman and child. Take time today and tomorrow to find those reasons to praise the Lord. Perhaps even make a list of the blessings that God has given to you. Don't allow the enemy of our souls to tout you and make you believe that your life is nothing worthy of praise and much too replete with sadness and hardship that God is not deserving of any praise.

God takes great pride in each of His creations - He loved each of His children enough to allow his Son Jesus to die on the cross for the forgiveness of our sins. If for no other reason than this alone, we need to praise Him.

Hallelujah from the heavens
Hallelujah in the heights above the earth
Hallelujah all His angels
Hallelujah for the last will be first
Let everything that has breath praise the Lord
Let everything that has breath praise the Lord

Hallelujah in the morning
Hallelujah for the beauty of His scars
Hallelujah in the twilight
Hallelujah sun and moon and shining stars
Let everything that has breath praise the Lord
Let everything that has breath praise the Lord

When the night seems so long (throw your hands to the sky)
You can sing a new song (wipe the tears from your eyes)
When you're weak, He is strong
He can heal your wounded soul
And calm the storm inside

For all your times of laughter
In every hopeful prayer
When the world weighs on your shoulders
Through sorrow and your despair
With everything, with every breath, praise the Lord
Let everything, let every breath praise the Lord
Let everything that has breath praise the Lord
Let everything that has breath praise the Lord
Let everything that has breath praise the Lord
Let everything, let every breath praise the Lord

When the night seems so long (throw your hands to the sky)
You can sing a new song (wipe the tears from your eyes)
When you're weak, He is strong
He can heal your wounded soul
And calm the storm inside

Song by Sixpence None The Richer & Jars of Clay

2010 Cancer Survivor of the Year


1. First Sunday of each June is recognized as National Cancer Survivors Day.
2. Giving my second interview with local television stations after the presentation -if you know me well, you know that public speaking ranks right up there with chemotherapy for me!
3. Jan, the head oncology nurse who has cared for me for over a decade, read her tribute to me and I tearfully accepted the award from her.
4. My Cancer Survivor of the Year medal.

Since June 6th, I have been ill and in the hospital and have not remembered to post this story. On Sunday, June 6th (prior to being admitted on June 7th), I was honored by the Illinois-Indiana Oncology Nurses as their 2010 Cancer Survivor of the Year. Our family attended their celebration for National Cancer Survivors' Day (always celebrated the first Sunday of each June). Everyone knew about the award and did their best to guarantee that I would be in attendance. I was honored and humbled to be recognized with this award, as I am certain that every person who has battled this horrible disease, is worthy to be a recipient. It was a heart-warming and uplifting day that I spent with my family and members of my local oncology team. Thank you to my God, my family, doctors, nurses and staff who helped me to live this long to be named Cancer Survivor of the Year! It was a bit ironic and uncanny to realize that the Survivor of the Year went from this day of recognition to the ICU in a bit over 12 hours.

Update & Request for Prayer: June 15, 2010

I am sorry that I have not updated the Blog sooner. I am quite sick and very weak, still struggling to overcome these infections and recent set-backs. I was finally discharged from ICU late Sunday night. Sunday was a nightmarish day. I received all three of the IV antifungals and antibiotics, one after the other and then had to be desensitized to yet another antibiotic that I would go home with (oral). This desensitization used the IV version of the drug first and it was toxic to veins. I received 13 doses of this harsh IV medication- varying in quantity and strength (since I was desensitizing). The drug felt like fire creeping down the inside of my already tired veins. I curled up in the bed, tears in my eyes, holding my arms, to no avail. I prayed for God to pass each minute on the clock as quickly as possible. My nurse tried to wrap my arms/veins in warm wraps and that didn't help either. Finally, the long five or six hours of this ended and we realized then that the drug had infiltrated into the deep tissues of my right wrist/lower arm. This area was swollen and very red but is improving today.

As I had mentioned in the last post, many of my counts have just gone out of control. Further proof that the human body is not to be infiltrated with this many powerful drugs at once (if ever). My potassium level was approaching dangerous levels late Sunday and if it had not improved yesterday, I was facing a re-admission to the hospital to begin treatments to lower the potassium. Thank You, Lord, for helping to lower the potassium. It had improved yesterday and will be rechecked tomorrow.

Leaving ICU Sunday night proved to be a deep, personal challenge for me. It is my own personal policy, that I always walk myself into a hospital and I always walk myself out of a hospital (never accepting the customary wheelchair ride out of ICU). This was the first time ever that I could not make my usual, slow walk to the outside world from ICU. I simply could not do it. My legs were and are like jelly. The strength I lost from being in bed 24/7 for one week is staggering. This may seem insignificant to others, but it was a stab in the heart to me. This simple defeat translated to me that I was losing the battle.

Sunday night, we returned home and after not being home long, I went to put on some pajamas and crawl into my own, soft bed. Evidently, I must have blacked out for a moment and fallen, because Kevin found me laying on the floor. My blood pressure and heart rate had been very low and slow all day Sunday, so I assume that was what happened to me.

I had to be awake at 7 AM yesterday and my Dad and Mom took me to the oncologists' office for my first of fourteen IV treatments of the antifungal. After ten attempts in the wee hours of Sunday morning in ICU to locate a vein and start a new IV, the nursing supervisor told the staff not to stick me anymore (after all, we had tried IV's in my hands, arms, shoulders, legs and feet).

I realized yesterday that I was losing vein access and without vein access, I cannot receive the medicine that I require. After yesterday's IV, I contacted my Infectious Disease doctor in Indianapolis to ponder the feasibility of having a PICC line inserted for the remaining IV's. He agreed and made those arrangements for me and I will have that installed tomorrow afternoon (more on that later - my most important prayer request tonight).

Today, Dad and Mom took me for another IV treatment and I made arrangements with insurance for tomorrow's PICC installation and this weekend and next weekend's IV's since I will have to return to the hospital for those. Unless one has walked in these shoes, no one can even imagine what it is like to be this ill, trying to coordinate all of this care, appointments, medicines, insurance requirements, and other logistics just to make it all happen. Thank God, I have always been an organized, determined overachieving type personality. :-)

Tomorrow, I will receive the PICC line at 2 PM (ET) in Indianapolis. They are going to insert this into the deep veins of my bicep area and then thread the catheter up the vein into my chest and into the main vein above my heart. This will be performed in a cardiac catheter lab and they are using ultrasound guidance instead of contrast dye (due to my dye allergies). Due to my multiple drug reactions, I have asked not to be sedated. So, please pray for God's peace and comfort to be mine as I undergo this procedure. I should be done in around an hour they told me.

Secondly, please pray that there will be no complications for me. My platelets run low due to the leukemia, so I am asking for there to be no bleeding or other vascular complications. Lastly, please pray that every medical personnel will pay particular attention to every detail that could help this PICC line to be as sterile as possible. We all realize that the risk of an infection entering my bloodstream through this line is a very serious possibility. Please pray that I can make it through these next 2-3 weeks with no infections in the PICC line until it can be removed. It will be used for all of my IV's and blood draws. My IVIG treatment is a blood treatment and can also be used through the PICC, so I will use the PICC for this treatment on June 30th and then I will returned for its removal probably before the July 4th weekend.

Tonight, as my body struggles against infections and leukemia, I am very, very tired and weak. I can only turn to His Word:

"And he said unto me, My grace is sufficient for thee: for my strength is made perfect in weakness. Most gladly therefore will I rather glory in my infirmities, that the power of Christ may rest upon me." (2 Corinthians 12:9)

Weakness. My body and mind and spirit are tired like never before. This Scripture assures my heart tonight that His strength is going to be made perfect in these very circumstances. His grace is sufficient. I know I cannot, in my own physical strength and courage, survive this. No way, no how. I will step slowly, hour by hour, day by day and keep trusting Him each step of the way. When I don't have any human strength remaining, I trust that the strength of the Holy Spirit will infuse my body.

One word for strength that we sometimes read in Scripture is dunamis - and can be translated "God's miracle working power". That is precisely what I ask for tonight - His miracle working power - His strength to revitalize and reinfuse my failing body with life and health and courage to make it through another setback.

Sunday, June 13, 2010

New Day, New Concerns

Please continue to pray. This is Day 7 in ICU for me. Several new and puzzling concerns have arisen.

First, overnight 10 attempts were made to begin a new IV and all failed. My veins are simply failing me. The nursing supervisor called off that vein search party and I am trying to make it through today's IV's with the same line. The general consensus is an indwelling port needs to be surgically inserted into my chest - definitely not without risks for me. High on the agenda will be locating a vascular surgeon for this task.

Today is Day 7 for me in ICU. The current plan is to complete this mornings's Tygacil IV antibiotic, desensitize me to yet another oral antibiotic, Doxycycline (to replace the Tygacil upon discharge) and to infuse today's IV Micafungin before release. I will transition the IV Tobra to intranasal Tobra and I will continue IV Micafungin as an outpatient for two additional weeks.

At last, my temperature did return overnight to my normal 97 range and it remained there this morning. This is a praise.

I remain on 20 mg prednisone (twice daily) as I taper off of the earlier IV steroids given to prevent drug reactions and due to the suspected bout of adrenal failure Sunday evening (I have secondary adrenal failure due to chronic steroid use). Glucose levels have been slightly elevated from the steroids, but nothing overly concerning (110-160). Long acting insulin has been used (Lantus).

However, my family physician was just in and she had several bits of puzzling and concerning information.In the last 24 hours, my WBC increased from 70,500 to 136,000. Neupogen was given yesterday and is being given when the ANC drops below 10,000 as I fight these infections.

We cannot locate any specific reasons but my potassium level has been steadily increasing this week from 4.4 on admittance to 5.6 today. I have researched all of these drugs and see no specific reference to hyperkalemia (elevated potassium) from them. My doctor said one or more of these 3 drugs can induce hemolytic anemia (that could increase potassium) but my hemoglobin is improved, not declining. She also mentioned a very high glucose level could increase potassium levels but she wouldn't think so at these levels. She wants this potassium level checked daily and if it reaches 6 she said I will have to be readmitted and treatment against the elevated potassium initiated. I know hypercalcemia can be an oncology emergency and related to the disease process - the many pieces of the puzzle grows more confusing.

Please also pray for my kidneys and liver as these drugs are difficult on them and my related kidney counts are worsening.

Friday, June 11, 2010

Slammer Sentence Continues: June 11, 2010

Day Five of my sentence continues (in Intensive Care, not the penitentiary). However, I have noted some similarities. I remain "locked in my 'cell'" 24/7. The food consists of nothing much more palatable than the bread and water rations for inmates. And at times, the punishment (also known as treatment) is brutal.

I apologize for the lapse in reporting. Wednesday and Thursday were challenging days. On Wednesday, care collasped on many fronts. While I most usually will receive exceptional care on this ICU floor, there are always exceptions. A combination of a young nurse, a lack of respect for a patient who advocates for her health care needs and concerns, violation of my HIPPA rights and failing access to veins reached a crescendo on Wednesday. Life in the slammer is certainly not without challenges.

My access to veins for chemotherapy and IV medications has really started to fail. When the IV was lost on Wednesday, it took 14 additional attempts to restart the IV. I even had to relent and agree to attempts to begin IVs in my feet, legs, and shoulders in addition to hands and arms. I am going to be one massive bruise when these IVs conclude.

Yesterday, hospital administration intervened with regard to the non-medical concerns and problems and it was a return to quality nursing care and attention. The IV has held overnight despite being placed in the bend of my wrist of my dominant right hand. Tomorrow night it will have to be replaced, please pray for a site to be easily located and accessed. Discussions continue regarding the risks versus benefits to me to have surgery to "install" a portacath into my chest - this would allow for direct access to the large veins that lead into the heart versus using peripheral veins as we currently are doing.

For reasons that I do not comprehend, schedules here in the "slammer" are quite inhumane. I am exhausted from lack fo sleep. Last night, I finished the fourth and final IV of the day at 11:30 PM. At 3 AM, the lab came to draw more blood. At 4 AM, radiology appeared for another chest x-ray. At 7 AM, the shifts change and the days begins again. I need to go home just to SLEEP.

If I improve over the weekend, it is planned that I will leave ICU Sunday evening. Then I will transition to outpatient IV therapy for a minimum of two additional weeks (seven days a week). Weekdays, I will go to my oncologists' infusion center for IVs and on the weekends, I will return back to this hospital's outpatient infusion center.

I am thankful to see the sunrise today. I am grateful for the amazing doctors and nurses who do respect my self advocacy as a patient and who go beyond the call of duty to help me to heal. I am blessed for family and friends who pray for me, visit me, and help to carry other burdens for me as I lay in this bed. I am eternally grateful for a Savior Who never leaves me, Who comforts me in the darkest hours when I am alone in ICU, and Who has rescued me from death's clutch, time and time again.

Thursday, June 10, 2010

Unending Roller Coaster Ride

The unending roller coaster ride continues. On Tuesday, the Leukemia Lightning Bolt 'Coaster had raced up to the top of the largest hill. Some small improvements and receiving all of this arsenal of drugs without complications allowed for an upturn on the roller coaster ride.

However, late Tuesday, more reports sent the 'Coaster racing downward, speeding out of control and to the bottom of the hill. A third mold has begun growing out on my lung cultures. One of these fungal organisms is enough to battle - but not three.

Luke 1:37
For with God nothing will be impossible.

As the speeding coaster accelerated Tuesday night, plunging, plunging, my spirits plunged as well. On Monday and Tuesday, I was stuck with needles at least 12 times daily. Surgery to install a port or PICC line (where I wouldn't be stuck so many times), was discussed. Now, the general consensus is that this will only pose another infection risk to me. At what point will I say, "No more?" This is frightening because the balance has shifted a great deal this past year - where the battle to live and survive begins to pale in comparison to the hope and promise of Heaven with no pain and suffering.

Psalm 147:3
He heals the brokenhearted and binds up their wounds.

The roller coaster ride zigs and zags through mazes of turns. Most likely, I will have to remain in ICU until Sunday. I will then begin 7 day a week IV infusions - it appears, unfortunately, that while weekdays will be continued at the oncologists' office. However, they have discontinued weekend infusions, so that will mean being readmitted to the hospital for weekend care. Please pray that this will all easily transition next week and that only the antifungal will have to be continued outpatient. If that occurs, then I can watch Lil Man and just need help with him a couple hours per day during the IV's.

Proverbs 16:9
A man’s heart plans his way, but the LORD directs his steps.

All that I can do at this point, is to return my meditations to Mark 5:25-34 (AMP). This disease has induced great suffering and often times, the treatments themselves induce pain and suffering. In the midst of this heartache and pain, I will continue to place my hope and confidence in Him. Either path that this roller coaster ride pursues, will end in victory for me - either I will be healed and whole or I will enter the gates of my eternal Home.

And there was a woman who had had a flow of blood for twelve years, and who had endured much suffering under [the hands of] many physicians and had spent all that she had, and was no better but instead grew worse. She had heard the reports concerning Jesus, and she came up behind Him in the throng and touched His garment.

For she kept saying, 'If I only touch His garments, I shall be restored to health.'
And immediately her flow of blood was dried up at the source, and [suddenly] she felt in her body that she was healed of her [distressing] ailment.

And Jesus, recognizing in Himself that the power proceeding from Him had gone forth, turned around immediately in the crowd and said, 'Who touched My clothes?'

And the disciples kept saying to Him, You see the crowd pressing hard around You from all sides, and You ask, Who touched Me? Still He kept looking around to see her who had done it.

But the woman, knowing what had been done for her, though alarmed and frightened and trembling, fell down before Him and told Him the whole truth.
And He said to her, Daughter, your faith (your trust and confidence in Me, springing from faith in God) has restored you to health. Go (into) peace and be continually healed and freed from your [distressing bodily] disease.

Tuesday, June 8, 2010

Beautiful Beautiful

These lyrics that are so applicable to my situation today.

Beautiful Beautiful
Francesca Battistelli

Don’t know how it is You looked at me
And saw the person that I could be
Awakening my heart
Breaking through the dark
Suddenly Your grace

Like sunlight burning at midnight
Making my life something so
Beautiful, beautiful
Mercy reaching to save me
All that I need
You are so
Beautiful, beautiful

Now there’s a joy inside I can’t contain
But even perfect days can end in rain
And though it’s pouring down
I see You through the clouds
Shining on my face


I have come undone
But I have just begun
Changing by Your grace


To listen to the song:

The Much Delayed Update & Request for Prayer: June 8,2010

Sorry for the delay in updating you. God certainly heard and honored all of our prayers yesterday. I have never had to experience three IV drug desensitizations (back to back) in one day, but it went perfectly. I had NO drug reactions or complications. Thank You, Jesus.

To review - most of you recall that I have been fighting these fungal lung infections since early March. I had two positive cultures in May and received sensitivites for one but not the other. My Infectious Disease (ID) doctor wanted the second set before selecting the IV antifungal. I was never at peace with that plan, but accepted it (I do yield to the doctors, once in awhile!) :-) Unfortunately that second culture sample was contaminated by the lab (of ending errors) and sensitivities were delayed. Last Monday was when my neutrophils (infection fighting white blood cells) crashed to the most dangerous level and immediately I had a fever (known as febrile neutropenia). I did not feel well most of the week and weekend and the fevers never ceased.

On Saturday, I e-mailed Dr. H. (THE leukemia specialist of the world who is from the UK). I was becoming increasingly more concerned about my condition and the "wait and see" approach to treating. I suspected, rightfully so, that a bacterial infection had developed with the fungal infections. I mapped out a plan for Dr. H to review about what I thought I needed - checked for CMV; consideration that PCP (P carnii pneumonia) was a threat; and that I needed an IV antifungal; IV Tobramycin given my history of pseudomonas; and a broad spectrum antibiotic to address other infections not yet recognized. Dr. H agreed with my plan.

Unfortunately, I didn't make it to Monday to present the plan to my doctors. Sunday night about 11 I became very ill. I was chilling and had rigors so hard my teeth were chattering, despite having a pile of blankets covering me. My heart rate began racing and my blood pressure was all over the place. I didn't think I was going to make it. This lasted for over five hours. I made the decision not to go to the ER. It always promises to be a nightmare of an experience and I was willing to take my chances at home. I assumed Sunday night that I was septic (infection in bloodstream) or the infections were causing these symptoms.

I reached my doctor on Monday morning. She called my ID doctor. (And this was the God-thing) he devised a plan that was almost identical to what I had proposed to Dr. H (and these doctors hadn't discussed my plan with me)! They admitted me immediately to ICU yesterday morning. Evidently, due to the stress on my body from the infections, leukemia, and fever, I had gone into acute adrenal failure, which can be deadly. I already have secondary adrenal failure from all of the steroids I have used and I had forgotten to add extra steroid coverage (I live on steroids to support adrenals) when I worsened. Thus, the crash. Once again, He heard my prayers and saw my tears and pulled me through.

The ID doctor prescribed:

-IV Tygacil - a new, powerful broad spectrum antibiotic
-IV Micagungin - antifungal
-IV Tobramycin - powerful antibiotic to defend against Pseudomonas and other gram negative dangerous bacteria (in combination with the Cipro I take daily) Note: Never allow a doctor to treat Pseudomonas with just one antibiotic.
-10 days of Neupogen injections (One of my primary prayer requests right now is that God will have to sustain my counts. One side effect of each of these three drugs is pancytopenia - meaning that they can all cause declines in neutrophils, hemoglobin, and platelets - not good when you have counts like we leukemia patients usually walk around with!) Also, one of the drugs has the potential to induce deafness, so please pray protection over my ears.

The Germ Patrol has cultured about everything humanly possible in my body, so we "patiently" await those results.

They called in a critical care pulmonologist to consult with me. He agreed with the plan of action but remains concerned about an indolent form of PCP that does not always show on x-ray. He ordered an LDH level and told me that there is some research to indicate that SOMETIMES - and he emphasized this - that an elevated LDH level can indicate PCP pneumonia - my LDH was normal. Another praise.

Unfortunately, I have had to continue on IV steroids - 4 times daily. So be looking for my bloated, steroid face coming to a town near you (but the steroids do de-bloat my enlarged spleen and lymph nodes - YIPPEE)! :-) And as always, when I take IV high dose steroids, I become insulin dependent. I am receiving two kinds of insulin, four times daily to help control my glucose levels until the IV steroids can be tapered.

The Tygacil poses great risks because it is in a class of drugs that I have severely reacted to in the past. Kevin had waited all evening to be here when they started it. Finally, at 10last night, I told him to go home - I was at peace and he needed sleep. I am certain God sent me an Angel Nurse - a Christian who stayed with me the entire infusion and all we did was talk about the Lord, quote Scriptures to each other, and discuss the Rapture. I was blessed. My Provider had not neglected me once again. All of my nurses have been exceptional this admission.

No one will even mention when I am going to be discharged. Based on past similar experiences, I will probably be in ICU all of a week - best case scenario - so keep those e-mails coming because it is soooo boring. I am almost totally restrained with leg pumps on both legs (to prevent another Pulmonary Embolus); heart monitor cords, pulse ox monitor and blood pressure cuff.

Good news today - my deeply clouded mind (always a sign to us that I am in trouble) has cleared some. I couldn't even compose an update yesterday and you know I am the wordy wordsmith who can crank out essays with ease (normally) :-) My temperature has decreased - if it doesn't resolve then the bronchoscopy (scope into lungs) will be scheduled. So I am very grateful to see that. My BP is still low (60/40; 70/50). Pulse ox is better, so that is good. I think one of these weapons of mass destruction has reached its target (infection) successfully!

Sunday night when I was so ill I kept reading these words I had written. They have encouraged me so these past couple of days. I pray that you will be encouraged today. God, You are my Hero! And all of your prayers have been very much appreciated. This load is so heavy, yet God has promised me His strength. I exist and function through the strength the Holy Spirit bestows upon me. Guidance, power and peace -- I am moving toward a Higher Place. Earth is nothing but a place I stopped to "visit" for a short while, known as life. I am a pilgrim on this journey of life. He knows. He bore His pain with such courage and grace on the cross - May I only do partially as well as I face my pain - let courage and grace and love and joy still flow from my body, even when it is crumbling. May His message of forgiveness, love, hope and eternal life be shared through my life each day.

Disclaimer - Please overlook errors due to my being mentally challenged and over-drugged at the moment (remember my "I have a customer on my head update" - should have been cyst not a customer but that provided a good laugh. :-)