A Journey Toward Healing and Heaven

It's Been A Month Since I Blogged?

2011-06-23T16:02:00.000-04:00

I realized today that it has been a month since my May 23rd update. The days just fly by and it becomes more and more of a challenge to carve out time for writing. Thank you for your continued prayers, e-mails of concern and encouragement. I will provide an update in reverse chronological order.

We learned yesterday that May's positive fungal culture from my lungs was identified as Penicillium. The sensitivities showed that it is most responsive to the Posaconazole (antifungal that I take daily). Perplexing. It appears although the fungus is present in my lungs that the Posaconazole might be keeping it from going into a full-blown dangerous infection in my lungs. The second best drug choice for this Penicillium fungi is IV Micafungin that I take often, so depending upon what last week's culture reveals, IV antifungals loom. Yuck.

I saw my doctor yesterday because she leaves on vacation tomorrow. We are both concerned because several new problems exist and without the commander-in-chief of my medical team, I am lost. Currently, we are addressing:

-Penicillium fungi identified from lungs and worsening of cough
-Platelets further declined - I now have bleeding gums and bruises from head to toe. My doctors have suspected ITP (autoimmune destruction of my platelets) for over a month now, since my platelets are low but my hemoglobin is normal. Giant platelets were found on yesterday's blood sample, yet another sign pointing to the possibility of ITP. We need to resolve this dilemma.
-Neutropenic for the first time since January
-All of the biopsy stitches were removed yesterday and one site on my back is infected - oral and topical prescription antibiotics are prescribed for that. Earlier in the month, I had three suspicious skin lesions biopsied by my dermatologist. Skin cancer remains a very high risk in leukemia patients such as myself. I praise God that all three sites were benign.
-Continued pain/complications from the fall (more details below). The foot drop (from nerve damage in right leg/foot) is worsening and my right foot "locks" in a toes pointed down position. It is very painful to try to "unlock" the position. I had physical therapy today so I am sore from that.
-I had my most difficult IVIG treatment this week. With the Gammunex brand, I usually do not have many side effects. This week, I was nauseated and had a bad headache the entire eight hours it infused. In the middle of the infusion, the nurse noticed that the "op-site" (clear plastic covering they stick over the iv site) was causing a reaction on my skin - it was blood red and remains very red, so my doctor said to apply prescription steroid cream to that site.

On June 2, I fell down a flight of ceramic tiled steps. I was carrying items in both hands, so I couldn't break the fall and I ended the tumble by hitting my head into the door at the bottom of the stairs. Needless to say, I have been in alot of pain since then and have had to begin physical therapy. With low low platelets, I have been covered from bruises from the fall and the biopsies. I sprained my right wrist and left ankle and messed up my left knee. My doctor told me that I need to use a cane to prevent further falls, but I must admit, my pride is standing in the way of that. We went by the medical supply store to buy a cane and I developed "cane rebellion" and would not go in - maybe another day. Lil Man takes every bat, stick and I imagine canes and beats on things like Bam Bam of Flintstone fame, so the cane might not work with him.

You might recall that I am claustrophobic when it comes to MRI's. After the fall, the doctor ordered an MRI. The tech put me into the MRI machine and I felt that moment of panic. I asked if she could remove the headphones she had put on me as they made me feel more restricted. She informed me that they had to remain on because of the noise of the MRI. I repositioned my arms and was beginning to wonder if I could stay in the machine for an hour when my new favorite song came on in the headphones. The MRI technician knows to put on my favorite Christian music station and "Blessings" began to play. I know for certain, that the Holy Spirit orchestrated that moment for me, to bring peace to my troubled soul. I immediately calmed and almost fell asleep at one point during the MRI.

The lyrics to "Blessings" by Larua Story:

We pray for blessings
We pray for peace
Comfort for family, protection while we sleep
We pray for healing, for prosperity
We pray for Your mighty hand to ease our suffering
All the while, You hear each spoken need
Yet love is way too much to give us lesser things
'Cause what if your blessings come through raindrops
What if Your healing comes through tears
What if a thousand sleepless nights are what it takes to know You're near
What if trials of this life are Your mercies in disguise
We pray for wisdom
Your voice to hear
We cry in anger when we cannot feel You near
We doubt your goodness, we doubt your love
As if every promise from Your Word is not enough
All the while, You hear each desperate plea
And long that we'd have faith to believe
When friends betray us
When darkness seems to win
We know that pain reminds this heart
That this is not our home
What if my greatest disappointments
Or the aching of this life
Is the revealing of a greater thirst this world can't satisfy
What if trials of this life
The rain, the storms, the hardest nights
Are your mercies in disguise

The MRI report revealed that the fall worsened the four herniated discs that were present prior to the fall; a fifth disc was ruptured by the fall and torn and is the villain responsible for the worsening of the numbness in my leg, loss of strength and increased pain. Normally, my doctor said she would begin with steroid injections into these discs, however, I consulted with a pain management doctor last year and he said I was not a "good candidate" for these procedures, so that door is closed. My doctor arranged for me to begin some physical therapy and other interventions as we sort through other possibilities. The x-rays of my foot revealed no broken bones, however I have injured a ligament in the bottom of my foot and I have plantar fascitis.

I had another infection in my eye since the last update and two skin infections (fungal and bacterial). And a bout with an adrenal crisis caused by a new medication wrap up this month in review.

I remain hopeful and my peace and joy are found in Him, thankfully, and are not based upon the circumstances of this world. I have learned to be content no matter my circumstance (as Paul recommended to us). My oncologist told me, "I have never had a patient who battled cancer for 15 straight years and who never took an anti-depressant or a pain medication like you." He is a Hindu and often asks me about my Source of strength and hope. All glory be to God. He is my source of comfort and encouragement each day. And I know He loves each of you every bit as much as He loves me, so rejoice in that in the midst of your sufferings.

It is About Time for An Update!

2011-05-23T11:55:00.002-04:00

I have been a slacker. And a hefty case of writer's block has continued. However, today I am at the cancer center receiving my treatment and this morning's IV steroids have lifted the brain fog and my writer's block was cured as well. I have been blogging away this morning to pass the hours and vowed that I would have an update posted before the end of the IV late today.

Worthy of celebrating and offering a praise to our Heavenly Father, is the fact that I have now not required IV antibiotics or antifungals for infections since mid-January - four months! This is a miraculous improvement for me. I have experienced continued infections but infections that have resolved with oral antibiotics. Not being attached to IVs for weeks at a time each month has improved my quality of life. Pray and believe with me that this record will continue to be broken! I spent much of last summer in ICU or at the cancer center, so I am believing that this summer I will be slammer-free and might even manage a vacation or two.

Last month we made the trip to Ohio State to consult with the leukemia specialist. It was a discouraging trip for us and I have decided against further trips. Research is vital to uncovering cures for diseases such as leukemia. However, it has been my personal experience that when consulting with the larger research centers such as OSU, that sometimes the focus is so strongly placed on clinical trial recruitment, that patient care suffers. Unfortunately, for late stage cancer patients such as myself, we do not even qualify for many of the trials. Recruitment eligibility criteria is stringent and usually my low counts, excessive infection history or history of drug reactions, excludes me from joining a clinical trial. It doesn't take a brain surgeon to know that a patient with my history is not someone that researchers are eagerly lining up to recruit. So we returned, at first, a bit discouraged, knowing that there are really no treatment options remaining there for me. Yet, it didn't take long, for the Holy Spirit to remind me, that I am trusting God to direct my paths and if I have been diverted from that pathway, it is in my best interest.

I developed a case of cellulitis (skin/tissue infection) on my face and an eye infection last month. I was desensitized to Clindamycin, which I have taken and tolerated in the past. Since I do nothing by the book, I broke out in a drug reaction rash all over my body on the third day of taking the Clindamycin. About the same time, I developed some lumps on my legs - being speckled from the rash and with egg shaped lumps, one fellow leukemia patient, diagnosed it as a good case of Easter-a-titis, since all of this transpired the week before Easter. The rash has cleared but the leg lump on my lower left leg is still present. My doctor suspects erythema nodosum. If it enlarges or does not improve, my Infectious Disease doctor said I will have to have it surgically removed for pathology.

My platelets continue to remain low and believe me, I have the bruises to prove it. Lil Man kisses those boo-boos and he is convinced they are then "all better"! What is puzzling to us, is the fact that my hemoglobin is doing well. Normally, as the bone marrow fills with leukemia cells and the marrow function is suppressed, the hemoglobin declines and then the platelets. I located a research paper that suggested in leukemia patients with normal hemoglobin but low platelets, that they be checked for H.pylori. H.pylori is a bacteria found in the gut that often is attributed to ulcer formation. A blood test was ordered and lo and behold, it returned positive for H.pylori - was this the cause of my low platelets? The puzzling piece of this information is that the test is an Ig antibody test. It can reflect that I have H.pylori OR it can be a false positive attributed to the IgG I receive in each month's treatment from 3000 blood donors. If one of these donors was H.pylori positive, that might be why my blood test returned positive. Additional testing will be ordered to make this determination.

PCP is the dangerous pneumonia that can develop in immune compromised patients with low CD 4 counts. My CD 4 count is 159 today which is very concerning (below 200 increases the risk of PCP). My last PCP PCR antigen test had "indeterminate" results. My Infectious Disease doctor said that result might indicate early stage PCP has developed, so we are carefully watching for any worsening of breathing and respiratory symptoms. I also had a positive fungal culture return on lung sputum. We are watching and waiting to determine if the symptoms warrant the introduction of IV antifungals (the drug I have to take 7 days a week for 6 weeks). Please pray specifically for my lungs - a great majority of leukemia patients are killed by respiratory infections - and both fungal lung infections and PCP can be killers. I am trusting the Holy Spirit to prompt my spirit, if I need to more aggressively respond to these two test results.

Thank you for your continued prayers and support. I am blessed.

Signs of the Times: Matthew 24 (The Message)

2011-05-23T11:20:00.000-04:00

1-2 Jesus then left the Temple. As he walked away, his disciples pointed out how very impressive the Temple architecture was. Jesus said, "You're not impressed by all this sheer size, are you? The truth of the matter is that there's not a stone in that building that is not going to end up in a pile of rubble."

3 Later as he was sitting on Mount Olives, his disciples approached and asked him, "Tell us, when are these things going to happen? What will be the sign of your coming, that the time's up?"

4-8 Jesus said, "Watch out for doomsday deceivers. Many leaders are going to show up with forged identities, claiming, 'I am Christ, the Messiah.' They will deceive a lot of people. When reports come in of wars and rumored wars, keep your head and don't panic. This is routine history; this is no sign of the end. Nation will fight nation and ruler fight ruler, over and over. Famines and earthquakes will occur in various places. This is nothing compared to what is coming.

9-10 "They are going to throw you to the wolves and kill you, everyone hating you because you carry my name. And then, going from bad to worse, it will be dog-eat-dog, everyone at each other's throat, everyone hating each other.

11-12 "In the confusion, lying preachers will come forward and deceive a lot of people. For many others, the overwhelming spread of evil will do them in—nothing left of their love but a mound of ashes.

13-14 "Staying with it—that's what God requires. Stay with it to the end. You won't be sorry, and you'll be saved. All during this time, the good news—the Message of the kingdom—will be preached all over the world, a witness staked out in every country. And then the end will come.

The Monster of Desecration

15-20 "But be ready to run for it when you see the monster of desecration set up in the Temple sanctuary. The prophet Daniel described this. If you've read Daniel, you'll know what I'm talking about. If you're living in Judea at the time, run for the hills; if you're working in the yard, don't return to the house to get anything; if you're out in the field, don't go back and get your coat. Pregnant and nursing mothers will have it especially hard. Hope and pray this won't happen during the winter or on a Sabbath.

21-22 "This is going to be trouble on a scale beyond what the world has ever seen, or will see again. If these days of trouble were left to run their course, nobody would make it. But on account of God's chosen people, the trouble will be cut short.

The Arrival of the Son of Man

23-25 "If anyone tries to flag you down, calling out, 'Here's the Messiah!' or points, 'There he is!' don't fall for it. Fake Messiahs and lying preachers are going to pop up everywhere. Their impressive credentials and dazzling performances will pull the wool over the eyes of even those who ought to know better. But I've given you fair warning.

26-28 "So if they say, 'Run to the country and see him arrive!' or, 'Quick, get downtown, see him come!' don't give them the time of day. The Arrival of the Son of Man isn't something you go to see. He comes like swift lightning to you! Whenever you see crowds gathering, think of carrion vultures circling, moving in, hovering over a rotting carcass. You can be quite sure that it's not the living Son of Man pulling in those crowds.

29 "Following those hard times,

Sun will fade out,
moon cloud over,
Stars fall out of the sky,
cosmic powers tremble.

30-31 "Then, the Arrival of the Son of Man! It will fill the skies—no one will miss it. Unready people all over the world, outsiders to the splendor and power, will raise a huge lament as they watch the Son of Man blazing out of heaven. At that same moment, he'll dispatch his angels with a trumpet-blast summons, pulling in God's chosen from the four winds, from pole to pole.

32-35 "Take a lesson from the fig tree. From the moment you notice its buds form, the merest hint of green, you know summer's just around the corner. So it is with you: When you see all these things, you'll know he's at the door. Don't take this lightly. I'm not just saying this for some future generation, but for all of you. This age continues until all these things take place. Sky and earth will wear out; my words won't wear out.

36 "But the exact day and hour? No one knows that, not even heaven's angels, not even the Son. Only the Father knows.

37-39"The Arrival of the Son of Man will take place in times like Noah's. Before the great flood everyone was carrying on as usual, having a good time right up to the day Noah boarded the ark. They knew nothing—until the flood hit and swept everything away.

39-44 "The Son of Man's Arrival will be like that: Two men will be working in the field—one will be taken, one left behind; two women will be grinding at the mill—one will be taken, one left behind. So stay awake, alert. You have no idea what day your Master will show up. But you do know this: You know that if the homeowner had known what time of night the burglar would arrive, he would have been there with his dogs to prevent the break-in. Be vigilant just like that. You have no idea when the Son of Man is going to show up.

45-47 "Who here qualifies for the job of overseeing the kitchen? A person the Master can depend on to feed the workers on time each day. Someone the Master can drop in on unannounced and always find him doing his job. A God-blessed man or woman, I tell you. It won't be long before the Master will put this person in charge of the whole operation.

48-51"But if that person only looks out for himself, and the minute the Master is away does what he pleases—abusing the help and throwing drunken parties for his friends—the Master is going to show up when he least expects it and make hash of him. He'll end up in the dump with the hypocrites, out in the cold shivering, teeth chattering."

(Emphasis mine.)

Glorious Day

2011-05-23T11:11:00.000-04:00

Much ado has been made by the media about a man's prediction that Christ would return on Saturday. Several people asked me what I thought about the prediction. I scoffed at the thought that anyone who claims to have read the Bible would even begin to state that he or she knows the exact date of Christ's return (the Rapture). Mark 13:32 explains precisely: “But about that day or hour no one knows, not even the angels in heaven, nor the Son, but only the Father." This verse instructs us that not even Jesus, the Son of God, knows the timing of Christ's return - only the Father possesses this information. So the next time you read or hear of someone alerting you about Christ's return, utilize discernment.

I believe there are signs all around us that His return is nearing. There is no doubt, that good can even emerge from this man's erroneous predictions. Recently, many people have paused to reflect on their hearts' conditions since the possibility existed for Christ to return for His children. And that is a positive outcome from his predictions. Everyday, we need to pause to confess our sins and be certain that our hearts are right in the event that Christ should return.

As these Casting Crown lyrics states: "One day He's coming, oh glorious day!"

To listen to this song: http://www.youtube.com/watch?v=q7fOhnHqtD0

One day when Heaven was filled with His praises

One day when sin was as black as could be
Jesus came forth to be born of a virgin
Dwelt among men, my example is He
Word became flesh and the light shined among us
His glory revealed

Living, He loved me
Dying, He saved me
Buried, He carried my sins far away
Rising, He justified freely forever
One day He’s coming
Oh glorious day, oh glorious day

One day they led Him up Calvary’s mountain
One day they nailed Him to die on a tree
Suffering anguish, despised and rejected
Bearing our sins, my Redeemer is He
Hands that healed nations, stretched out on a tree
And took the nails for me

Living, He loved me
Dying, He saved me
Buried, He carried my sins far away
Rising, He justified freely forever
One day He’s coming
Oh glorious day, oh glorious day

One day the grave could conceal Him no longer
One day the stone rolled away from the door
Then He arose, over death He had conquered
Now is ascended, my Lord evermore
Death could not hold Him, the grave could not keep Him
From rising again

Living, He loved me
Dying, He saved me
Buried, He carried my sins far away
Rising, He justified freely forever
One day He’s coming
Oh glorious day, oh glorious day

One day the trumpet will sound for His coming
One day the skies with His glories will shine
Wonderful day, my Beloved One bringing
My Savior Jesus is mine

Living, He loved me
Dying, He saved me
Buried, He carried my sins far away
Rising, He justified freely forever
One day He’s coming
Oh glorious day, oh glorious day

Triathlon Trek

2011-05-23T10:32:00.000-04:00

This weekend our daughter Marissa crossed the finish line at her first triathlon. A triathlon is a daunting task for anyone but as a Type 1 diabetic, it was an achievement of a lifetime for Marissa. As a health care provider, she is well aware of the potential for complications in Type 1 diabetics, so she exercises and trains all the time and her good health is a testament to God's faithfulness to her and her commitment to take care of her body. The swim was 800 meters, she then rode 25 miles on her bike and ran 5 miles.

Her husband, one of our other daughters and her husband, and my husband and me were her Encouragement Team. Once she pedaled off on her bike, we jumped in our car and traveled back roads so that we could be waiting around her half-way point to encourage her on. We had signs in tows and binoculars for scouting her arrival from afar.

These are some photos from the Triathlon. Congratulations, Maris!

Your Great Name

2011-05-23T10:21:00.000-04:00

As Christians, we are aware that we should pray "in Jesus' Name". At times, it might almost become habit that we conclude our prayers with "In Jesus' Name we pray". Natalie Grant's song "Your Great Name" has reminded me of the enormity of the power of the Name of Jesus. It is not something to be taken lightly. Jesus' Name brings salvation, healing, freedom, deliverance, and hope, among many other results of the power of uttering and believing in His Name. The line of lyrics that empower me is, "The enemy, he has to leave, at the sound of Your great name." When life's challenges attempt to rob our hope and peace, via the wiles of the enemy, we need to recall these lyrics and cry out in the Name of Jesus against those attacks of the accuser. Be blessed and listen to this song today: http://www.youtube.com/watch?v=QXH0MjGe10s .

Lost are saved; find their way; at the sound of Your great name
All condemned; feel no shame, at the sound of Your great name
Every fear; has no place; at the sound of Your great name
The enemy; he has to leave; at the sound of Your great name

Jesus, Worthy is the Lamb that was slain for us, Son of God and Man
You are high and lifted up; and all the world will praise Your great name

All the weak; find their strength; at the sound of Your great name
Hungry souls; receive grace; at the sound of Your great name
The fatherless; they find their rest; at the sound of Your great name
Sick are healed; and the dead are raised; at the sound of Your great name

Jesus, Worthy is the Lamb that was slain for us, Son of God and Man
You are high and lifted up; and all the world will praise Your great name

Redeemer, My Healer, Lord Almighty
My savior, Defender, You are My King

Jesus, Worthy is the Lamb that was slain for us, Son of God and Man
You are high and lifted up; and all the world will praise Your great name

Relay for Life 2011

2011-05-23T10:03:00.000-04:00

Photos Top to Bottom:

The luminaria ceremony with the luminarias honoring and memorializing

cancer warriors spelling out HOPE!

Part of our team cheers and claps for my Dad and me as we complete the Survivor Lap.

Our Relay for Life 2011 team photograph.

My two local oncologists - on the left is my radiation oncologist and on the right is my local

hematologist/oncologist.

A couple of weeks ago our family participated in Relay for Life 2011. Our daughter Marissa worked diligently for the cause and our son-in-law Scott designed the orange (orange is the color for leukemia awareness) shirts for our team. We arrived home from RELAY FOR LIFE at 2 AM since we were scheduled to walk from 11 to midnight. I wonder how we drew that short straw. My Dad surprised me and he and my best friend (both cancer survivors) walked the Survivor Lap with me. The three of us who are cancer survivors wore the purple Survivor Shirts. The son-in-law with his hair spray painted orange is the designer of the shirts and our comic son-in-law. That is not his natural color!

Lil Man kept calling RELAY FOR LIFE "that thingy" . He thought "that thingy" was great fun - balloons, a track to run on, cupcakes, and all kinds of fun for kids. I thought how thankful I was that at his young age of two, his innocence protects him from the gravity of cancer.

RELAY FOR LIFE was held at a local university. The luminaria ceremony was inspiring, heart-wrenching, and hopeful - conflicting emotions all felt at the same time. Cancer patients' families and friends purchased luminaries that were printed with their messages. Some honored those survivors still fighting and others memorialized those who had lost their battle. These were placed around a track that circled the football field, illuminating the night skies. As we turned the third turn on the track, a row of 15 luminarias had my name and messages on them from families and friends. Thank you to all who donated in my honor. It was a memorable event for all of us.

Stronger

2011-05-23T09:27:00.002-04:00

This Mandisa song, "Stronger" is a new favorite of mine. In the midst of unrelenting storms of life, we can be reassured that He remains in control and ever-present. To stay afloat, walking on water, our focus must remain on Christ and not on the storms that threaten to swallon us. Enjoy!

Hey, heard you were up all night
Thinking about how your world ain't right
And you wonder if things will ever get better
And you're asking why is it always raining on you
When all you want is just a little good news
Instead of standing there stuck out in the weather

Oh, don't hang your head
It's gonna end
God's right there
Even if it's hard to see Him
I promise you that He still cares

When the waves are taking you under
Hold on just a little bit longer
He knows that this is gonna make you stronger, stronger
The pain ain't gonna last forever
And things can only get better

Believe me
This is gonna make you stronger
Gonna make you stronger, stronger, stronger
Believe me, this is gonna make you ...

Try and do the best you can
Hold on and let Him hold your hand
And go on and fall into the arms of Jesus
Oh, lift your head it's gonna end
God's right there
Even when you just can't feel Him
I promise you that He still cares
'Cause if He started this work in your life
He will be faithful to complete it
If only you believe it
He knows how much it hurts
And I'm sure that He's gonna help you get through this
When the waves are taking you under
Hold on just a little bit longer
He knows that this is gonna make you stronger, stronger

The pain ain't gonna last forever
In time it's gonna get better
Believe me
This is gonna make you stronger

To listen to this song: http://www.youtube.com/watch?v=U3TPq8ZSvTk

Food for Thought

2011-04-06T12:28:00.001-04:00

"Whenever a man is ready to uncover his sins, God is always ready to cover them." - Unknown

"Pray as if everything depended on God, and work as if everything depended on man." - Francis J. Spellman

"Jesus can turn water into wine, but He can't turn your whining into anything." - Mark Steele

"Guilt is concerned with the past. Worry is concerned about the future. Contentment enjoys the present."
- Unknown

"I make it a rule of Christian duty never to go to a place where there is not room for my Master as well as myself." - John Newton

"Death is not a period but a comma in the story of life." - Amos J. Farver

The Best Medicine

2011-04-04T23:15:00.000-04:00

I have a prescription for the best medicine for whatever ails you. This medicine relieves stress, brings laughter to enhance immunity, and makes the tiredest body jump out of the bed. I must warn you that insurance will not cover this medicine. And it is not accessible by everyone.

That medicine is the love and companionship of a grandchild. Lil Man and I have been together almost every week day since he was six weeks old and his Mommy had to return to her career. He is now almost two and one-half years old. What a journey this has been for me. When he naps in my arms, I stroke his curly hair and tell him that he will never know the life he has breathed into me. He will never know the laughter and joy he has given to me on days that otherwise would have been filled only with pain and suffering.

I know this will sound like a typical Grammy remark, but we stand in awe and amazement at what he says and does. In the words of Aunt "Tef" - "He has never been a Terrible Two - he is a Terrific Two!" I agree. Lil Man has a sense of humor that I have never witnessed in a two year old. His intelligence is impressive (even according to his doctor). And we have such fun together.

Everyday is a new adventure. When I pick him up in the mornings at his Mommy's office, he talks all the way home on our twenty minute drive. I told a friend that sometimes I develop "conversation fatigue" with Lil Man who knows how to chatter (that might be a genetic inheiritance from his Mother). He is really singing these days and those musical notes are precious to me. Having a grandson after three daughters has been an interesting experience. Today we took small pieces of lumber to tie on the top of his Crazy Coupe so that he could pretend he was driving home from the lumber yard. Basketball goals, T-Ball sets, four-wheelers and monster trucks have replaced the home once filled with enough Barbies to populate a small nation and girly girl clothes and trinkets.

I ask him, "How much does your Grammy love you?" And he replies, "A WHOLE BUNCH!" Then he tells me, "Grammy, me love you a whole bunch". Love of a grandchild is a unique bundle of emotions and joy that continually grows just like the child to whom that love is directed. I am grateful beyond words for living long enough to experience "Grammy-dom". I am just waiting to see if more little ones join our family and if so, how many will be added. I might have to buy a bigger vehicle if this daycare experiences a population explosion.

Love You, Lil Man!

Writer's Block Improving! An Update: April 4, 2011

2011-04-04T23:02:00.000-04:00

I know, I know, I have been silent on the blog for over a month. A combination of a significant case of writer's block and just needing a leukemia vacation have contributed to the absence. So in the future, remember this fact: if I disappear from my blog, it usually means I am doing pretty well and just living life or I have kicked the bucket!

We are preparing for an upcoming trip to Ohio State to see my leukemia specialist. As my last post alluded, I was having significant drops in my counts and we scheduled the appointment to determine the cause of the declines. Marrow failure was in the forefront of our concerns. Amazingly, miraculously, my counts began improving through the later part of March. My hemoglobin reached 13.6 - higher than it even was at my diagnosis - almost fifteen years ago. GO BONE MARROW! That victory was short-lived because last week my counts declined again. The roller coaster ride has been relentless in 2011.

I believe the radiation was worth the risks. My lymphocytes (cancerous) always comprised about 98-99 percent of all of my white blood cells. That percentage is now running 40-50% which is a significant reduction in my tumor load.

I have officially made it over two months without ANY IV antibiotics. Of course, God deserves all the credit for this. I believe He has directed my steps down a path with many stops along the alternative medicine path. A combination of oil of oregano, olive leaf extract, grapeseed extract, elderberry and goldenseal seems to be eradicating infections via a natural pathway versus antibiotic overload. Praise God.

At last, my flu quarantine ended and I have spent the past week as free as a bird! I had been at home since Christmas Eve dinner and church services. The only exceptions being "vacations" to the hospital or the doctors' offices. Grocery shopping, receiving a hair cut and style, and running errands never had such broad appeal. I am free at last!

Another major praise is that my very wise family doctor recommended a supplement (backed with scientific research) for the long-standing, unbearable fatigue I have suffered with leukemia. I decided I would add it to my protocol and I have had an amazing few days with increased energy and stamina! Please pray this will continue as it the closest I have felt to "the old me" for a very long time. Heaven knows, as the nanny to my two year old grandson, energy is a premium commodity!

The heart monitor I wore for twenty-four hours in late March did not reveal any serious arrythmias to which we could attribute my heart palpitations. I am experimenting under the guidance of my family doctor with potassium and magnesium dose adjustments to see if the palpitations improve. There were periods of very low heart rates recorded on the monitor (down to 24 beats per minute) but I declined further testing. When God decides the old ticker should stop ticking, nothing will stop it. I am trusting Him.

Thank you for your continued prayers. I was reflecting the other day about the family, friends, churches and individuals who have literally prayed for me for almost fifteen years. Those are some faithful prayer intercessors, isn't it? I am humbled that the Holy Spirit has brought my needs to the remembrance of so many believers for so many years.

A New Favorite

2011-04-04T22:43:00.001-04:00

Just in time for Easter, I discovered Casting Crowns' song Glorious Day. The lyrics replay over and over again in my mind and spirit. I am inspired and grateful for what my Savior has done for each of us - dying on a cross for the forgiveness of our sins.

Go to You Tube to listen: http://www.youtube.com/watch?v=VXp6xcY5IqU .

The lyrics are:

One day when Heaven was filled with His praises

One day when sin was as black as could be

Jesus came forth to be born of a virgin

Dwelt among men, my example is He

Word became flesh and the light shined among us

His glory revealed

Living, He loved me

Dying, He saved me

Buried, He carried my sins far away

Rising, He justified freely forever

One day He’s coming

Oh glorious day, oh glorious day

One day they led Him up Calvary’s mountain

One day they nailed Him to die on a tree

Suffering anguish, despised and rejected

Bearing our sins, my Redeemer is He

Hands that healed nations, stretched out on a tree

And took the nails for me

One day the grave could conceal Him no longer

One day the stone rolled away from the door

Then He arose, over death He had conquered

Now He’s ascended, my Lord evermore

Death could not hold Him, the grave could not keep Him

From rising again

One day the trumpet will sound for His coming

One day the skies with His glories will shine

Wonderful day, my Beloved One, bringing

My Savior, Jesus, is mine

Urgent Prayer Request: March 3, 2011

2011-03-03T13:13:00.000-05:00

I apologize for the blog absence. It seems as though we repair one problem and then another problem arises. Today, I ask for your focused prayers for my bone marrow and the recovery of my blood counts. For the past three weeks, my blood counts have been on a downward spiral and they have reached very concerning levels. I have required Neupogen injections the past two weeks to improve the severe neutropenia. Today my Absolute Neutrophil Count is only 300.

Our main concern is that my bone marrow could be failing - either from the leukemia or from the radiation I have received. I cannot survive without a functioning bone marrow. When I made the decision to try radiation last fall, I was fully aware of the risks - one being marrow failure - however, the risks of radiation appeared to be less to my medical team and me than the risks of chemotherapy. Difficult decisions to make when there is no good answer.

I request urgent, fervent prayer today that my marrow will be restored and my counts will improve. I ask for prayer that God will supernaturally protect me from life-threatening infections during this time of low white blood counts. I ask for wisdom for my physicians and for God to open a door for me to receive a bone marrow biopsy - what my leukemia expert physicians say that needs to be performed. If I cannot obtain the biopsy locally, I anticipate having to travel to a cancer center in the near future.

I will try to keep the blog updated more this month.

Reflections on Prayer

2011-02-14T13:19:00.000-05:00

I have been reading Andrew Murray's The Ministry of Intercession, originally written in 1898. This book has blessed and encouraged me to focus more time and dedication to prayer. Prayer truly is our link to God and to believe we are too busy or too self-sufficient to need prayer time in our lives, is robbing ourself of a vital necessity.

Some of the quotes that I have highlighted thus far in the book include:

It is only in a life full of the Holy Spirit that the true power to ask in Christ's Name can be known.

Christ actually meant prayer to be the great power by which His Church should do its work, and that the neglect of prayer is the great reason the Church has not greater power over the masses in Christian and in heathen countries.

There must be more definite and persevering prayer.

The law of God is unchangeable: as on earth, so in our traffic with heaven, we only get as we give. Unless we are willing to pay the price, and sacrifice time and attention and what appear legitimate or necessary duties, for the sake of the heavenly gifts, we need not look for a large experience or power of the heavenly world in our work.

If we allow this one matter, unfaithfulness in prayer, to convict us of the lack in our Christian life which lies at the root of it, God will use the discovery to bring us not only the power to pray that we long for, but the joy of a new and healthy life, of which prayer is the spontaneous expression.

It was intense, continued prayer that prepared the disciples' hearts, that opened the windows of heaven, that brought down the promised gift.

Direct, definite, determined prayer is what we need.

Prayer was made of the Church, without ceasing to God for him. That prayer availed much; Peter was delivered.

How clear the two great truths stand out: where there is much prayer there will be much of the Spirit; where there is much of the Spirit there will be ever-increasing prayer. So clear is the living connection between the two, that when the Spirit is given in answer to prayer it ever wakens more prayer to prepare for the fuller revelation and communication.

God still seeks for men and women who will, with all their other work of ministering, to specially give themselves to persevering prayer.

To consider how many years have passed since Murray originally penned these reflections, illustrates how timeless and vital prayer is to each and every generation. May we commit anew today to a life of prayer.

Half Way Through February

2011-02-14T12:51:00.001-05:00

Fourteen of February's days have passed and I have not been admitted to ICU or been to the cancer center. That is pretty amazing for me! After January's bumpy start to 2011, the break has been more than welcome. I truly needed a break from all things leukemia. That probably best explains my absence from the world of blogging - my apologies to those of you who have e-mailed with concerns about my absence.

My insurance and prescription card provider (Medco) have done their best to irritate me and have caused me much grief this month. Medco has decided to reject prescription after prescription. They rejected my antifungal and I was without it for three days, so I am battling a fungal sinus infection due to their negligence. Don't you just love it when the insurance "gods" try to outguess our doctors about what medications we need?

I did go to Indianapolis last week and saw my Infectious Disease doctor. He is concerned about the fungal infection in my sinuses since they can spread to the brain (and God knows my brain is about the only body part that still functions well). He said if I don't improve soon, I will have to resume IV antifungals everyday. So, please pray for the infection to improve and for Medco not to reject my antifungal tomorrow when I go to refill it. My Infectious Disease doctor, who was consulted throughout January's quandaries, commented on what a miracle it is that I survived all that I did in January.

I probably have never sensed such a debt of gratitude in my heart to God as I have this month. Time to reflect on all that I survived and conquered, with the help of Almighty God, has been humbling and awe-inspiring. Thanks, God! (And thanks to all of you for your prayers of intercession for me.)

A Quick Update: January 30, 2011

2011-01-30T15:35:00.000-05:00

Last week drew to a close and I completely the daily IV antibiotics. Gradually, I have been able to wean off the oxygen and my breathing is improving daily. Tomorrow, I will receive my all day IVIG treatment and then February will dawn on Tuesday. And I have officially declared February as the "I will not be admitted to the hospital or require IV drugs or blood transfusion Month!"

I am always hard on myself. I expect to be up, whizzing around and full of energy. Then I paused in reflection yesterday about January. I spent fifteen of thirty-one days in ICU, at the cancer center or receiving outpatient IVs at the hospital. I received six blood transfusions. I had an ablation. I received two IVIG treatments. Two drug desensitizations were required. And a week of IV antibiotics had to be tossed into the plan. No wonder I am tired - I need to learn to be more accepting of my body and what it can still accomplish amidst staggering medical demands.

I thank you for your prayers. January is drawing to a close with my heart being filled to overflowing with gratitude. God has truly protected me, healed me, and encouraged me through it all.

Through It All
Andre' Crouch

I've had many tears and sorrows,

I've had questions for tomorrow,

There's been times I didn't know right from wrong.

but in every situation,

God gave me blessed consulation,

That my trials come to only make me strong.

Chorus:

Through it all,

Through it all,

I've learned to trust in Jesus,

I've learned to trust in God.

Through it all,

Through it all,

I've learned to depend upon His Word.

VERSE 2:

I've been to lots of places,

I've seen alot of faces,

There's been times I felt so all alone.

But in my lonely hours,

Yes, those precious lonely hours,

Jesus let's me know that I was His own

CHORUS

VERSE 3:

I thank God for the mountains,

And I thank Him for the valleys,

I thank Him for the storms He brought Me through.

For if I'd never had a problem,

I wouldn't know God could solve them,

I'd never known what Faith in God could do

To listen to this song: http://www.youtube.com/watch?v=tFzdFzzBqTc

Quotes to Ponder: January 30, 2011

2011-01-30T15:05:00.000-05:00

"The great thing to remember is that, though our feelings come and go, His love for us does not."

-C.S. Lewis

"A crushing hurt comes to our heart and the sympathizing, scarred hand of Christ presses the wound; and just for a moment, the pain seems to intensify ..... but finally the bleeding stops."

-Beth Moore

"The essence of Christianity is not about religion at all, but about the person of Christ. Religion is a dead, man-made thing, and at the heart of Christianity is something else entirely - God, Himself, alive."

-Dietrich Bonhoeffer

"But why, if the answer to prayer is so positively promised, why are there such numberless prayers? We found that Christ taught us that the answer depended upon certain conditions. He spoke of faith, of perseverance, of praying in His Name, of praying in the will of God. But all these conditions were summed up in the one central one: 'If ye abide in Me, ask whatsoever ye will and it shall be done unto you'.

It became clear that the power to pray the effectual prayer of faith depended upon the life. It is only to a man given up to live as entirely in Christ and for Christ as the branch in the vine, that these promises come true."

-Andrew Murray

A Prayer for Today: January 30, 2011

2011-01-30T14:38:00.000-05:00

Precious Father,

We love you and praise You for all that You are to each of us. You are our Savior, our Healer, our Redeemer, our Deliverer, our Provider, and the Anchor of our souls.

When everything in this world shakes and is unstable, You remain that Rock of Ages. You are never changing and we are grateful that we can always count on you to be the one fixed object of our affections.

Thank You for the forgiveness that you so lovingly give. May each of us uncover a new found purpose in our lives - a God assigned purpose - may our life heartaches and heartbreaks never drown out our purposes here for You and Your Kingdom. May each of us be inspired today and allow Your light to shine through our lives, so that others will come to know You as Lord and Savior.

There is no one like You, Father. I am certain that many who will read this will be suffering today. I am even more convinced that none of these concerns will ever separate us from Your love, Lord. May disease, depression, heartache, pain, financial burdens, and every other type of challenge be addressed by You. May each of my family members, friends, and blog readers be reminded tonight of the deep, deep love and affection that You have for each of us. Love overcomes all.

In Jesus' Mighty Name I pray. AMEN.

No Matter What

2011-01-27T21:07:00.000-05:00

The other song that has been added to my favorites list this week is Kerrie Roberts' song No Matter What.

I’m running back to your promises one more time, Lord that’s all I can hold on to,
I gotta say this has taken me by surprise, but nothing surprises you.
Before a heartache can ever touch my life, it has to go through Your hands,
and even though I, keep asking why, I keep asking why,

No matter what, I’m gonna love You, no matter what I’m gonna need You,
I know that You can find a way to keep me from the pain but if not, if not,
I’ll trust you, no matter what, no matter what.

When I’m stuck in this nothing-ness by myself, I’m just sitting in silence,
there’s no way I can make it without Your help, I wont even try it.
I know You have Your reasons for everything,
so I will keep believing, whatever I might be feeling,
God you are my hope, and you'll be my strength,

No matter what, I’m gonna love You, no matter what I’m gonna need You,
I know that You can find a way to keep me from the pain but if not, if not,
I’ll trust you, no matter what, no matter what.
Anything I don’t have You can give it to me, but it’s ok if You don’t,
I’m not here for those things, the touch of Your love is enough on its own,
no matter what I still love You and I’m gonna need You

No matter what I’m gonna love you, no matter what I’m gonna need you,
I know that You can find a way to keep me from the pain but if not, if not, I’ll trust You,
I know that You can find a way to keep me from the pain, but if not, if not,
I’ll trust you, no matter what no matter what no matter no matter what

To listen: http://www.youtube.com/watch?v=OA3MSqufJP4

You're Not Alone

2011-01-27T20:52:00.000-05:00

Earlier this week, around 4 AM, as I waited in ICU for morning to dawn, this Meredith Andrews song played from my favorite Christian music station. So many times, God speaks to my spirit through music. These words washed over my soul and encouraged my heart. I pray they will encourage you tonight - remember, you are never alone. And I was not alone in that ICU room.

You're Not Alone
Meredith Andrews
I search for love
When the night came and it closed in
I was alone
but you found me where I was hiding
and now I'll never ever be the same
It was the sweetest voice that called my name
saying

You're not alone
for I am here
let me wipe away your every fear
My love, I've never left your side
I have seen you through the darkest night
and I'm the one who's loved you all your life
All of your life

You cry yourself to sleep
cause the hurt is real
and the pain cuts deep
All hope seems lost
With heartache your closest friend
and everyone else long gone
You've had to face the music on your own
but there is a sweeter song that calls you home
saying

You're not alone
for I am here
let me wipe away your every tear
My love I've never left your side
I have seen you through the darkest nights
And I'm the one who's loved you all your life
All your life

Faithful and true... Forever
For my love will carry you....
You're not alone
for I... I am here
let me wipe away every fear... Oh yeah
My love I've never left your side
I have seen you through your darkest night
Your darkest night
And I'm the one who's loved you all your life
All of your life

www.youtube.com/watch?v=sNW1hrZ4V8Y

It's the Best Day Ever!

2011-01-27T15:37:00.001-05:00

One of our grandson's favorite new songs to sing in his two year old singing voice is, "It's The Best Day Ever!" So I echo those lyrics today. Today (and everyday) is the BEST day ever. No matter what life brings our direction, life is so precious and priceless, we need to be reminded to celebrate each moment we have air in our lungs.

This is a post about praises to the Most High God - my Everything. I praise Him for what He has carried me through the past 48 hours. Forty-eight hours ago, I was at the cancer center, receiving my IV antibiotic. The nurse alerted me that my hemoglobin was down two points from Monday. My family doctor told me to go straight to the gynecologist office since the blood loss has continued to be severe. So my husband picked me up and took me to her office. The news was grim. She told me that if we did not intervene, despite the risks of infection and reactions for me, that this blood loss was going to result in my going into shock and possibly dying from it. She told me to go home and pack my bags and medicines and report to ICU. An uterine ablation was scheduled for the early morning hours and I was type and cross matched for the search for more blood for transfusions to be located.

One would think that a night alone before surgery in the dark and quiet of an ICU room, would arouse fear and trepidation in one's heart. I only slept for an hour but spent the rest of the night praying, listening to my praise and worship music and reading God's Word. I sought His perfect peace and courage to face the next day. Since I have so many drug reactions, the concerns were about how to sedate me and how to prevent infection risks. I asked God for the courage and peace to not to be put to sleep and to just ask for a local Lidocaine injection.

They rechecked my hemoglobin after midnight and alarmingly, it had dropped even further and was approaching the dangerous 5 (normal range 12-16) level. Discussion was made by the physicians involved and they elected to perform the procedure and then follow it with two transfusions of packed red blood cells. (Again, I thank all of you blood donors!)

A bit before 8 AM yesterday my beloved family physician arrived at the hospital and told me that she was going to surgery with me. Talk about an answer to prayer - she alone knows all of my reactions, what to do with the reactions, and everything about my body. This dear, precious doctor went to the operating room with me and left her practice. She sat right beside my head, holding my hand and gently telling me what was happening, each step of the way. The perfect peace of God was so intense in that operating room that I just put my MP3 ear buds in my ears with my worship music in the ear the doctor was not using to communicate, prayed and I made it without being sedated! When I was finished, the anesthesiologist said, "If I just had that done to me I would've died without anesthesia!" Then he said I could even bypass the recovery room since I had not been sedated and return to my ICU room! What the Great Physician can do with us when He is the Chief of our Medical Teams.

In addition to the other very particular requirements that my blood must meet, this time the irradiated, CMV negative, leukodepleted blood was also washed. My very wise retired NIH oncologist, Dr. M., told me after the four transfusions earlier this month, to have my doctor have the blood washed. I struggle so hard with reactions to blood products. Washing the cells this time made such a difference - no reactions and I tolerated faster rates so the entire units could be infused without any wasting. (It is challenging to envision the person who had to wash each one of those little red blood cells, isn't it?) :-)

The plan on Tuesday was for me to stay until Friday in ICU and then return home for the weekend and receive IVIG on Monday. God had His plan ....they wheeled me out of ICU at 10 PM last night and I slept like a baby at home. Isn't that astounding? I'm very weak still and I am typing this from the cancer center since I had to return for my IV antibiotics today (and tomorrow).

Today, on my drive here, both my family physician and the gynecologist contacted me within an hour of each other, to tell me the uterine biopsy is BENIGN!!! YAY GOD! Such a relief.....

And more good news - my hemoglobin is 10 today! Just two more points and I am "normal". (Those near to me might debate if I am ever "normal"!)

Your prayers for me were apparent. Once again I am humbled and I stand in amazement at what He has pulled me through this time. Despite what unreal, challenging weeks these have been, God has shown Himself mighty over and over again. To God be the glory . To you I send my gratitude and love.

Soon it will be February and Stacie is going to be healthier and stronger and not be admitted to ICU or have to go for outpatient IV's on any day in February! AMEN?

Breathing

2011-01-25T10:42:00.000-05:00

Praise God, the fourth antibiotic FINALLY appears to be making small improvements. I inhaled and exhaled a normal breath overnight. I never thought breathing could feel foreign to me but it did last night. We take breathing for granted until we cannot inhale and exhale. What a glorious feeling to breathe. Way to go God!

My cough has lessened and the oxygen levels have improved. I am still experiencing shortness of breath but I think it is probably more related to the low hemoglobin now instead of the pulmonary infections.

The blood loss needs to stop now in Jesus Name or the doctor said I will have to be admitted for more transfusions. Please agree in prayer with me that can avoid that. They will check a daily blood count in an effort to catch the hemoglobin before it drops as dangerously low as a couple of weeks ago.

This month's need for blood made me once again reflect on the selfless people who donate blood. If you are a blood donor, we thank you from the bottom of our hearts. Each month I require the blood product (immunoglobulin) donations of over 3000 people. Then when critical times emerge for cancer patients, red blood cells and platelets become life-saving resources. If you are a donor, thank you. If you are considering blood donation, I encourage you today to give the true gift of life.

I will go for IV Tobramycin this afternoon at the cancer center. Our oldest daughter is helping me today so Lil Man will be here soon with her. He is the best medicine!

Please Pray ...... And Then Shout a Praise!

2011-01-24T21:08:00.000-05:00

Have I ever been slothful about updating the blog! Right now, trying to remain alive and tend to all things medical is consuming almost every thought and day. As with the last update, my mind is swarming and I cannot even determine where to begin. So I will begin with this - I am still trusting God. I still have faith that He will sustain me and muliply my days. Do I wish God would reach down tonight, touch my body, heal me quickly and relieve my pain and suffering? You bet I do. Yet, I know as terribly challenging as my life is right now, that He is holding my arms up, cheering me on, saying, "You can do this, Stacie. Don't give up. Keep fighting. I am right beside you."

Since November, these two or three months have rated at the top of my challenging scale. I have remained acutely aware of one fact - I am gracious beyond words when I am so ill and I cannot request prayer - to know that so many of you are daily interceding for me in prayer to our Father. I know if I disappear from blog-a-sphere, many of you are checking in and the Holy Spirit is prompting you that I am in need. It comforts me when I am too ill to write and my brain is too oxygen deprived to think, to know that my empty written words are not even needed for the Holy Spirit to rally my prayer warriors on my behalf. God does so much better when we just step out of the way, doesn't He?

After my last update, more test results returned pointing to worsening of my already compromised immune system. I knew this was a possible risk when I began the radiation. Yet, it was one of those gut wrenching decisions I had to make. If I didn't treat the leukemia, it would threaten my life. If I did treat the leukemia, my immune system would take a beating. The consensus is that my immune deficiency is now "profound" and my radiation was officially suspended. A portion of my spirit was so disappointing for all of us knew that radiation was my "last chance" at knocking back the leukemia. (But don't dispair - God can use radiation even when it is not being actively administered to my body - I am saving the good report for the last paragraph - kind of like a cliff hanger in a good novel!)

On Friday, Mom and Dad took me to the hospital for tests. I worsened overnight on Thursday - higher fevers, declining oxygen levels, and the coughing/shortness of breath grew worse. My doctor suspected a blood clot in my lung because of my history of PE (pulmonary embolus) and due to the fact that I have been taking estrogen for the blood loss (clots are a risk of estrogen). Thankfully, the test was negative for the blood clot but the waiting for results was a bit tedious.

With no blood clot to blame for the worsening of symptoms the typical "work up" was started - blood cultures, sputum cultures, PCP silver staind, CMV antigen, fungal stains and cultures. Many of these tests take time to produce answers and we do not have the luxury of time right now. My doctor told me that if I continued to decline, she said she would have no choice but to put me back in ICU and began broad spectrum antibiotics, antivirals and antifungals while we wait on the test results. The concern remains rightfully intent and concerning that the CD4 count being so dangerously low at 62 (below 200 is considered extremely dangerous) that PCP is lurking and evading our attempts to identify it. I have been told that with my condition and that CD4 count, if PCP is detected, I could have a 50/50 chance of surviving it. But despite these dire verbal warnings, I believeonly God holds the number of days planned for my life.

Later Friday, the doctor increased steroid doses and added at-home nebulizer (breathing) treatments for me along with oxygen.Temperatures, low oxygen levels and wheezing continued and by Saturday morning, the decision was made to send me to the hospital for desensitization to IV Tobramycin. The doctor also reordered all of the cultures and stains we had done on Friday to be repeated. Research revealed that a simple blood test known as LDH is sometimes used to help diagnose PCP. If LDH is elevated it "can" be an indicator of PCP. Nothing definitive, but as medical detectives, we search for whatever clues we can find. My LDH level was negative, so that "clue" gave us a bit of relief. A bronchoscopy is our one remaining, truly accurate way to identify what is going on in my lungs. I detest the bronchoscopy (scope downt throat into lungs), but it remains a looming option.

When immune compromised patients have pulmonary symptoms present, we cannot assess our condition by fevers. It takes an immune system that is intact to mount fevers and I can be very ill and not present with a fever. Instead, monitoring the oxygen saturation levels is a more reliable method to assess worsening of infection. The doctor had my oxygen levels monitored all day Saturday at the hospital and since I have oxygen at home, she decided I was safer to go home and sleep in my own, less germy bed and return to the hospital on Sunday morning. I found a delicious cinnamon tea and I begin brewing that left and right. The steam and heat from it are soothing to my lungs and feels as though it opens up the airways some when I inhale it. We returned to the hospital again on Sunday morning to receive more IV medicaitons.

Overnight last night, the respiratory problems continued. I have never had a pulmonary infection that "felt" like this one or that has been so long-running as this infection. It has been my nemesis for two weeks. I began chilling around 1 AM - we know that when I have chills and rigors, it is time to go to the hospital since it can indicate sepsis or other serious complications for me. I piled on blankets and prayed - I didn't want to have to awaken Kevin or my doctor at that hour of the night and sometime while praying, the chills must have stopped and I dozed off.

I e-mailed my doctor around 6 AM and by 8 AM, she called me and had already consulted with my Infectious Disease doctor. There are not many doctors like dear Dr. S. She worked laborously all weekend, arranging IVs, desensitizations, medications, and my care. God certainly blessed me with many wonderful medical professionals who tread this journey with me.

PCP (p. carinii pneumocystic pneumonia) remains one of the biggest threats to my life with the even deeper immune suppression that the radiation has inflicted. Today, the Infectious Disease doctor said that he believes that I have another staph infection in my lungs (what I had in June when I was in ICU for a weeek). So I returned to the cancer center today and they desensitized me to Cleocin (antibiotic) and then proceeded with the planned IV Tobramycin (antibiotic). He warned us that I am in a position to develop a c.diff infection - a serious complication of the colon when too many powerful antibiotics are being used. I have battled c.diff before and I would prefer not to repeat that experience. My doctor put me on powerful probiotics that I will take every time that I take the Cleocin.

The Infectious Disease doctor also surprised us by telling my doctor that there is alot of H1N1 (swine flu) in Indiana this year. We were shocked with that information - I thought H1N1 had been buried last year. Afterall, the 24 hour news stations are not touting H1N1 like every story reported on this time last year. To err on the side of caution, he ordered a swab to look for any signs of influenza in me although I am not symptomatic of that and he said it was a very unlikely cause of the breathing problems. He said it would be too bad if we overlooked something like that as the source of the pulmonary problems. There should be an answer on that tomorrow.

Unfortunately, the blood loss continues. My hemoglobin rallied to 12.0 (finally to the normal range) on Monday and has been on a fast descending trajectory this week and is 9.0 today. Everyone keeps asking me what are the doctors going to do about the blood loss. Good question. There are options here - all with significant risk for me - however, we cannot even begin to consider those options and difficult decisions until I can breathe better and correct the pulmonary concerns. If the blood loss doesn't cease soon, there will be no alternative but to transfuse me again. Please pray specifically for God to control this "issue of blood". We read of Him healing the lady with the "issue of blood" in Mark 5 and he told her after she was healed, "Daughter, your faith has made you well." Lord, let my faith and trust in You not waiver in the midst of all of this suffering and turmoil.

After this long-winded January in review, I want to close with a praise. All of these complications - respiratory, bleeding, infections, in and out of hospitals - have attempted to blot out a very good report. And I believe it is appropriate to close this post with that news. Somehow, someway (God's Way) as we have been utterly consumed with this chaos known as our lives right now, God has been working and using the radiation to whomp the leukemia. My radiation oncologist had told us that he anticipated for the radiation to continue working for a couple of months after the last treatment (in December).

God has been at work - even without my traveling for radiation - we have watched my spleen shrink more; we cannot locate any enlarged lymph nodes in my body; and on Monday, I had an amazing blood report. The cancerous lymphocytes always would run around 98-99% of the total white count (normally should be around 40%). And my lymphocyte percentage was down in that 40-50% range. That is significant. I will be eager to closely review my response once all of these other complications have been resolved to discertain what degree of remission of the leukemia has been achieved.

My family doctor told me the other day, "Stacie, when are we going to celebrate that degree of remission that you have achieved?" And it dawned on both of us that we have been so engaged trying to keep me alive from all of these other dangers, that the radiation just continued to work behind the scenes on the leukemia. The one lymph node on the left side of my neck has never disappeared in 14 years with 5 different chemotherapy protocols. And I cannot find that little (big) rascal!

Praise God with me about this good news that is trying to be recognized among all of the negative reports. I am praying that God will deliver me once again from these current serious threats to my life and I will be able to be assessed and learned that the leukemia has been given the biggest black eye that we could deliver to the enemy of my health.

I told you it would be a cliff hanger closing! Thank you for your continued prayers and words of encouragement.

Lag in Blog Updates: Please Pray

2011-01-09T14:50:00.000-05:00

My apologies for the long delay with my updates. It has been a brutal start to 2011. I don’t even know if I can recall everything I need to share. I thank Tina for sending out a brief request for prayer this week when I was admitted to ICU.

On December 30th, I had a planning CT for my radiation – supposedly just of the abdomen but I suddenly learned on Monday, January 3rd that a pelvic CT had been done and numerous concerns were discovered. A large mass and a smaller one were discovered in my uterus. And two cysts were on my ovaries. The CT report and my oncologist told me I needed immediate gynecologic review to rule out additional cancers. I had been struggling with abnormal bleeding and it had worsened before the end of the year.

My blood counts were marginal on Monday, but the radiation oncologist proceeded with radiation. I also received my IVIG treatment on Monday.

On Tuesday, I saw my family doctor who examined me and was very concerned. Fortunately, the cardiac concerns seem to be checking out as a repeat EKG was “perfect”. Thank, God, for that good news. My hemoglobin was treading downward and weakness was increasing.

On Wednesday, I went for two pelvic ultrasounds. Good news emerged with those – the large mass was a mass of blood clots and the ovarian cysts appeared benign. Later that day, an ovarian cancer marker test returned as negative. Great news and praise for those concerns not to be cancerous but the amount of blood loss was escalating and I knew I was getting in danger.

My theory for these problems is that the radiation has damaged my left ovary (since it is within the radiation field). The ovaries produce estrogen and estrogen helps to regulate cycles. Also, some estrogen is produced in the kidneys and they have been irradiating my left kidney also, which lies behind my spleen. Thus, the massive blood loss has the potential to be radiation related. If this theory is proven true, the continuation of my radiation treatments will hang in the balance.

By Thursday, I was much worse. Our oldest daughter came to stay with me during the day and by afternoon; I was using oxygen and could barely walk from chair to chair. She took me to the doctor late in the day and as soon as the nurse saw me, she ran for the doctor. My pulse was 140, my lips and nail beds were colorless and she said that I had no choice but to be admitted to ICU. When we arrive at the hospital, my hemoglobin was down to 6.3 and since active blood loss was occurring, the doctor said the realistic hemoglobin value was in the range of 5. During 14 years of leukemia and chemotherapy (which always affects hemoglobin levels), I had never reached that dangerous level.

Obtaining units of blood for me is a challenge. Since I receive the IVIG blood-based infusions every month, typing blood for transfusions becomes more complicated. Also, all blood that I receive must be irradiated, leuko-depleted, washed and CMV negative. The blood could not be located locally and was finally located in Indianapolis and a driver brought it to us. The first of four transfusions began late Thursday night. As predicted, the hemoglobin level was in the 5 range because even after the first transfusion, the hemoglobin level did not budge from the 6.3 reading from Thursday afternoon. I began running fevers so antibiotic were added to protect me.

On Friday, I received two additional blood transfusions. I have had past serious blood transfusion reactions, but thankfully, the first three transfusions were flawless. We used plenty of premedications and very slow infusion rates. The blood loss continued to be so significant that we could not keep up with it even with transfusions. Another consultation was made and the medical team decided despite the risks of dangerous blood clots from IV estrogen, that we had no other choice. Normally, six IV doses are given for these situations but the doctors decided to try only two since I have had a blood clot in my lung before (PE). Almost instantly after the second IV, the blood loss stopped. I was so relieved but by Saturday, the blood loss resumed, hemoglobin levels remained low and I remained in ICU and on oxygen. A fourth blood transfusion was ordered and more blood was located in Indianapolis for me. Unfortunately, we decided to increase the infusion rate and it resulted in a reaction to the transfusion. I was so sick yesterday. Low dose estrogen was started, in an attempt to stop the blood loss without as great of chance of blood clots that could cause a stroke, pulmonary embolus, or heart attack.

My hemoglobin finally made it to the 8 range yesterday evening and the doctor decided to discharge me since the germy ICU environment is a risk to me. I left last night, so sick and still having so many problems to resolve. I will not able to receive radiation this week (and perhaps I will never receive anymore). I know of at least two procedures/biopsies pending for this week. If my hemoglobin continues to decline, more transfusions will be in my history.

My NIH oncologist also reminded us today that with four blood transfusions, my own clotting factors could have been altered. So some testing for this will happen this week.

And all of these new problems rest solidly on top of the mountain of other health challenges related to leukemia and infections. Please pray for my family, me and my medical team. Please pray that I will not develop blood clots from the estrogen (IV and oral). Please pray that the search for additional malignancies will continue to reveal nothing cancerous. Please pray for the blood loss to cease and the need for transfusions will conclude. Please pray for strength and grace to stand up under the enormous strain of so many things going wrong in my body.

I am reminded of this Scripture from Romans 4:

19 And not being weak in faith, he (Abraham) did not consider his own body, already dead (since he was about a hundred years old), and the deadness of Sarah’s womb. 20 He did not waver at the promise of God through unbelief, but was strengthened in faith, giving glory to God, 21 and being fully convinced that what He had promised He was also able to perform. 22 And therefore “it was accounted to him for righteousness.”

Abraham and Sarah longed for a son – but they were so very old. They did not look at their situation or consider the condition of their bodies. They didn’t waver at the promise of God. They were not doubtful or unbelieving. They grew in Faith and praised God. And that promised son was the answer to their prayers.

May I be able to replicate their faith-filled actions and witness this broken, failing body, restored and perfectly functioning. Please join me with prayers that are filled with praise, belief, and void of doubt and disbelief.

Congratulations, Sis!

2010-12-20T21:43:00.000-05:00

Our oldest daughter graduated with her Masters Degree in the Nurse Practitioner program on Saturday. We are very proud of her academic achievements and we are certain that she will provide compassionate, competent care to many patients. First-hand, she has witnessed, the vital role that nurses or nurse practitioners play in healthcare. Our family has witnessed outstanding nursing and we have experienced detrimental, dangeorus nursing. Our daughter pays attention to the needs of her patients' families as well. She has walked in those shoes as a family member of an ill patient for many years with me.

Her Dad wired her mortarboard with LED lights and she stood out in the sea of blue at the commencement exercises. Take a glimpse to see if you can locate our daughter!

Update & Request for Prayer: December 20, 2010

2010-12-20T21:31:00.000-05:00

Radiation was canceled again today due to my low blood counts. I received radiation on last Monday and then the two other fractions were canceled last week. It is time for my marrow to recover and produce some cells! My WBC, hemoglobin and platelets are all low. Please pray that bone marrow failure is not the problem. You might recall after the first couple of weeks of radiation in November, I had a similar problem with all of my counts dropping. We requested prayer and they recovered. I am trusting they will recover again since marrow failure would be a very serious development.

Before having labs drawn, I knew my hemoglobin was down in the 8 or 9 range because I can always hear a whooshing of my heart or blood flow in my ears when my hemoglobin is in that range and that happened all night. And I was correct! Between the whooshing and the cough, I only slept an hour all night. The doctor said he had never treated a patient who knows her body like I know mine.

All we can do is to pray and to be patient. Our plan was to have the 600 cGy cumulative dose completed on New Year's Eve, but that is not going to happen. I am looking at mid-January now before completing radiation. Just going three times weekly for the treatment is very tiring. I believe this week is Week 7.

The cough continues. We have received no new answers from the tests ordered last week. The EKG will be repeated on my heart on Wednesday of this week and I will return to radiation on Wednesday. More Neupogen is ordered and if my platelets recover some, I will receive acupuncture on Wednesday.

Thank you for your continued prayers.

Looking for My Savior

2010-12-15T22:04:00.000-05:00

This holiday season has been poignantly different for me. I have been too ill to enjoy the decorating and shopping and Christmas events that normally fill the calendar. Instead, hours commuting to the cancer center for lab work, radiation, doctors' appointments and tests have filled the calendar to over-flowing. Every year, it is my priority to retain my Christmas focus - Jesus IS the reason for the season - and I have usually succeeded.

This year, it hasn't been holiday hecticness that has distracted me, it has been the pain and suffering and all of the appointments. The fatigue from radiation has rocked me to my core. And today, I stopped amidst appointments at three doctors' offices, and realized I am failing miserably at remembering what all of this Christmas "stuff" is about. God, forgive me.

I am usually ever-listening to locate others in need at Christmas time, so that I can extend His love to them. My suffering and concerns have been looming so large this year, that, sadly, I have really just been thinking about myself. How did I ever allow leukemia to make me so inward looking, to the point where I am missing the blessing of helping others? I began reflecting and meditating on my shortcomings this Christmas season and asking for His help - looking for my Savior to lift my focus to Him and off of me and my challenges - they are all so temporary, as we know.

So tonight, on our drive home after hours in the car, shuffling from appointment to appointment, my husband said he was going to run in the grocery store to pick up something quick for dinner that he could prepare. I sat in the car while he shopped and God decided to drop me an opportunity to reach out to another in the spirit of Christmas. An elderly lady rode a motorized shopping cart out to her car parked across from us. She had several bags of groceries and crutches. I watched her hobble onto her crutches and I realized - God had just given me a way to serve Him. Exhausted, I left the warmth of the car and went to her and unloaded her groceries for her. I don't reflect on this to brag on my menial task, yet I reflect on it because today, God heard my prayers of sadness and repentance for not looking for ways to serve Him in the midst of medical mayhem. And He heard. And He answered. For the remaining ten days until Christmas, I will continue to look for my Savior and for His hurting people whom I can touch in any small way.

Update & Request for Prayer: December 15, 2010

2010-12-15T21:42:00.000-05:00

I will play "catch up" on my blog. It has been a medically eventful week (what's new?) so I will review the week's events. This is Week 6 of splenic irradiation for me (I have received 325 cGy of 600 cGy). Currently, each dose (or called a "fraction" in radiation) is 25 cGy. I began at 50 cGy per fraction but my counts could not tolerate that dose, so it was reduced. I had hoped to finish by the end of 2010, however, radiation will continue into January.

I continue to battle the pulmonary problems of coughing, wheezing and shortness of breath. So, I had a CT on Monday and it did not reveal any pneumonia, tumors, leukemic infiltrates in the lungs or fungal masses. That was all good news, however, it leaves us with many questions about what is causing the shortness of breath and cough. PCP (a dangerous form of pneumonia) remains a possibility since indolent PCP often will not reveal itself on CT or x-ray. Today, upon recommendation of my NIH doctor, a PCR test for PCP was ordered. In the morning, I will use a nebulizer with sterile water to collect a sputum sample. We will take that to the hospital and that should give us an idea if PCP is contributing to the cough.

The CT did reveal some new cardiac concerns and degeneration of my spine. I have never had heart concerns, so that was quite a shock. Many of the drugs I have taken can be damaging to the heart. Today, my doctor asked the nurse to perform an EKG. The doctor said today's EKG results are very concerning but her regular nurse was not there and the lady who did the EKG was new to the machine. So, my doctor wants to repeat the EKG early next week when her regular nurse is there before we panic. I truly cannot believe with everything else I am dealing with that now I have a cardiac concern. I knew that I had degenerative changes to my lower spine, but was not aware of the changes in my upper spine. Steroids can be detrimental to bones and I now live on daily steroids due to the failure of my adrenal glands.

Now, onto some better news! I received radiation on Monday, however, my counts were too low and radiation was canceled. Today my WBC is 2 - that is low and most of you know I usually have a high WBC. So the radiation is definitely at work - really working! My hemoglobin was decent and my platelets remain low. The remarkable news is that Monday's CT results revealed that the spleen is shrinking in size and there were no enlarged lymph nodes in my chest (enlarged lymph nodes remain in my neck, abdomen and under my arms).

Most exciting to me is the fact that my lymphocyte percentage today has gone from 99% to 57% (normal being 15%-41%). My ALC (Absolute Lymphocyte Count) has decreased by 96% since beginning radiation! Before long, I will have a normal lymphocyte count and I have never achieved that with any of my past five chemo/immunotherapy adventures! Remember, lymphocytes are the blood cell line that is cancerous - precisely, my leukemia is a cancer of the B-lymphocytes. T-Lymphocytes are included in these lymphocyte counts that are being walloped and I need God to protect as many of the "good" T-Lymphocytes as possible.

A WBC is not without risks to me. I received a Neupogen injection tonight and will tomorrow. With a WBC this low, I am supposed to avoid crowds. However, that will be impossible as our oldest daughter graduates Saturday with her Masters Degree in the Nurse Practitioner program (in a crowd of thousands, so I will be wearing a pretty pink mask!) There is no way I am going to miss that special event!

So please pray for God to protect me from further infections; for my marrow to be able to begin producing cells I need; for my heart concerns not to be serious; and for strength and energy to enjoy our daughter's graduation and reception on Saturday.

Update & Request for Prayer: December 10, 2010

2010-12-10T18:35:00.000-05:00

It has been a challenging week. I received radiation on Wednesday, however, the cough and breathing concerns continued to worsen. My sinuses worsened on Wednesday, so I had a sinus endoscope procedure on Thursday.

I awoke during the night very nauseated - the five consecutive radiation treatments have caught up with me again and the nausea and fatigue have returned. Since I was awake, I checked my e-mail and my trusted family doctor had emailed me at 11 PM last night to inform me that gram negative rods were growing out on the cultures from the scope. Gram negative rods are bacteria that can be highly dangerous to the immune compromised patient - some gram negative infections can kill in less than 24 hours. Included in the gram negative rod family is pseudomonas, which can be a life-threatening infection for people like me. I have battled it in the past and it is a formidable foe.

So this morning, my family doctor and infectious disease doctor decided to have me desensitized to another antibiotic - an oral one- to take while we wait on the lab to identify the gram negative bacteria (and we all know how many times the lab fails to provide vital answers to us). If pseudomonas or other bacteria are identified over the weekend that are not sensitive to the arsenal of antibiotics that I am taking, then I will be admitted to ICU for "big gun" IV antibiotics.

I arrived at the cancer center where I had my blood drawn and they installed a heparin lock in my arm so that I could go over to radiation without the IV pole. My counts were too low today, so radiation was canceled. My body probably embraced the break as it fights this infection.

Please pray for this infection to clear without a hospital admission to ICU. Please pray that the nausea and fatigue from the radiation will improve. Please pray that the radiation is beating back my foe, leukemia. Please pray that my breathing and cough will improve.

An Update & Request for Prayer: December 6, 2010

2010-12-06T21:18:00.000-05:00

What a day! What a day! I arrived at the cancer center before 8 AM and I was there for over nine hours to receive my IVIG treatment today. I don't know why the infusion lasted so long - usually it "only" takes around 8 hours. Others, who have not had serious reactions to the IVIG, are able to receive it in fewer hours. However, I have reacted negatively to it in the past, so I patiently wait for it to drop, drop, drop into my veins. The treatment is cumbersome, not without risks, and very expensive ($10,000 per month), yet, my infection rate has lessened with the IVIG and my number of hospitalizations has decreased,

I saw the clock approaching 5 PM and knew the radiation center was going to close before I could arrive there for my radiation treatment. Thankfully, the kind staff waited on me and it was going on six o-clock before I finished for the day.

The gram stains from my lungs revealed that there are gram positive cocci growing out. The cough is still deep and annoying. I anticipate some form of action tomorrow - either a CT of my lungs will be ordered, an appointment with the pulmonologist, or a change to IV medications. Since my T-Cells continue to decline (due to the radiation), a serious form of pneumonia, PCP is always a suspect. I am hopeful that a bronchoscopy and/or hospitalization is not in my future. There are too many Christmas "to do's" remaining for me to end up in the slammer.

I was neutropenic again, so more Neupogen injections have been ordered. My counts were low but stable enough for radiation today. As of today, I have received 275 cGy of 600 cGy of radiation that is planned. Slow and steady win the race, right?

Please pray for the complicated concerns that daily threaten my life. I want to see improvement before Christmas! I long to feel better and stronger. Thank you for praying.

Perfect Tree Search

2010-12-06T13:55:00.003-05:00

After a surprise eight-inch snow blanketed our property on Saturday,

we ventured through the woods of a local Christmas tree farm

to locate the perfect tree for our oldest daughter and son-in-law.

It was a magical Christmas moment - a chill in the air, snowflakes drifting to earth,

and the crunch of eight inches of snow underfoot.

After much searching, she located her perfect tree.

I thought I'd share some photos of our morning.

Radiation Update: December 3, 2010

2010-12-03T17:56:00.000-05:00

I have not been well this week, so I have lagged behind with my blog updates. With radiation and its effects on my blood counts, we were aware that my immune system would take further hits to its already fractured status. An infection in my lungs has taken up residence and has worsened all week. I saw my Infectious Disease doctor yesterday and he made yet another antibiotic change and if this infection worsens much more, I know I will be admitted to the hospital for IV medications. I have used oxygen off and on all week and this morning I woke up to my chest rattling and whistling. Having heard about the "death rattles", I was a bit concerned to hear such a ruckus emitting when I exhaled.

This morning, I called my radiation oncologist and he ordered cultures, labs and we decided to go ahead with today's radiation treatment. I actually received all three of this week's treatments. It appears that I am tolerating the lower (25 cGy) dose better than the larger dose(50 cGy) I received the first week. My counts have not bottomed out as drastically with the lower dose, however, we are not seeing the improvements in counts either. All of this is such a delicate balancing act - using enough radiation to kill the leukemic lymphocytes without eliminating my vital neutrophils, T-Cells, platelets and red blood cells. As soon as my counts begin to recover, we strike with the radiation again, knowing the recovered counts will again fall.

A CT Scan earlier this week revealed that after four weeks of treatment, my spleen has not shrunk and remains the same in size. That was disappointing, yet, I still contend that it is too early to label this treatment a success or a failure. The lymph nodes in my neck feel smaller, however, the enlarged lymph nodes in my abdomen and around my aorta and heart were unchanged on the CT Scan.

I will receive some Neupogen injections over the weekend and then on Monday, I will receive my all day IVIG treatment at the cancer center followed by radiation. I had hoped to finish radiation before Christmas but that will not happen. I do not foresee an end to radiation until perhaps late January with Christmas Eve and New Year's Eve being sabotaged by radiation treatments.

My Prayer for Today: November 26, 2010

2010-11-26T15:21:00.001-05:00

Precious Father,

Our humble gratitude cannot thank You enough, Lord, for what you mean to each of us. During a season of Thanksgiving, we focus on Your goodness and mercy. We thank You for saving our souls and chasing after our hearts, when we remained in our sins. We are grateful for the peace, strength, joy, courage and hope that Your Spirit places in our hearts and souls. Thank you for the provisions that come from Your hand to Your children.

As we transition from a season of thanksgiving to the celebration of the birth of Your Son, let us not be consumed with Christmas busyness. Help each of us to assign the true reason for the season at the top of our holiday “to do” list, Lord. May each gift we give be given with recollections of the gift of Your Son and the gift of salvation. May each blessing that we receive be a reminder to share with those who do without. Father, bring to our remembrance, during each of the days of the Advent season, the sacrifice that You made for each of us through the birth of the Christ Child.

With thanksgiving and gratitude, in Jesus’ Name, I pray. AMEN.

Post-Thanksgiving Update: November 26, 2010

2010-11-26T15:02:00.000-05:00

This morning, I returned for radiation and again my counts did not allow for me to receive the radiation. My hemoglobin had dropped an entire point since Wednesday and I was neutropenic again. Thank God for Neupogen! I am so tired from the low hemoglobin - and we all know that tiredness is not permitted during the Christmas season!

On Monday, my radiation oncologist said he wants a CT of my abdomen to check on the spleen size and to see if the retroperitoneal lymphadenopathy(enlarged lymph nodes at the back of my abdomen) have decreased in size. If so, he will reduce the size of the radiation field and hopefully, my counts will recover more.

We have been plotting our future course. He is a wonderful doctor who is compassionate, who listens, and who is conservative with the radiation. IF I should manage a complete remission (it is possible), then we hope to convince the insurance to pay for "maintenance radiation" to maintain the remission (much like Rituxan maintenance). I would only receive a very small dose of radiation every 6 weeks to maintain a remission. Please keep praying for the radiation to eradicate the leukemia. It is a formidable foe, however my God is a very big God.

I haven't felt well the past couple of days. I was awake until 4:00 AM yesterday morning and this morning. The antibiotic changes this week have caused diarrhea (not a good thing with our Thanksgiving feast staring me in the face). Also, I am having blood from my sinuses, as I usually do with serious sinus infections. The cough and fevers continue. I anticipate a sinus scope on Monday, as well.

Thanksgiving Reflection

2010-11-26T14:44:00.000-05:00

“Feeling gratitude and not expressing it

is like wrapping a present and not giving it.”

~William Arthur Ward

Contentment

2010-11-24T21:25:00.002-05:00

Philippians 4:11-13 (Amplified Bible)

“Not that I am implying that I was in any personal want, for I have learned how to be content (satisfied to the point where I am not disturbed or disquieted) in whatever state I am.

I know how to be abased and live humbly in straitened circumstances, and I know also how to enjoy plenty and live in abundance. I have learned in any and all circumstances the secret of facing every situation, whether well-fed or going hungry, having a sufficiency and enough to spare or going without and being in want.

I have strength for all things in Christ Who empowers me [I am ready for anything and equal to anything through Him Who infuses inner strength into me; I am self-sufficient in Christ's sufficiency.”

Once I began to absorb and obey these passages of Scripture, my life changed tremendously. Contentment is foreign to most people’s vocabulary. Without Christ at the center of our lives and heart, a very empty chasm exists. Therefore, people search and seek for anything to satisfy and fill that empty chasm. Unfortunately, nothing will ever satisfy the soul and heart of emptiness until Christ is invited to dwell in our hearts.

Even as a young Christian, I must admit that I did not live a life filled with contentment. As I grew and matured in my Christian walk, contentment began to fill my heart and soul. And I must admit to you that bringing my heart under the umbrella of contentment has been life changing. As this Scripture indicates, we must find our contentment in Christ – not from how much money we have or don’t have; by what health challenges we have or don’t have; or any other circumstances. Why? Because everything in this life is temporary – good times will transition into not-so-good times; good days will be replaced by difficult days – yet we must remain stable and fixed and content through it all. When we grasp contentment and strive to live in a contented state every day of our lives, no matter what happens, happiness and peace thrive. Seeking contentment has been one of my solutions to remaining mentally and emotionally intact through a 14 year cancer battle. I refuse to be discontented “just” because I have leukemia.

This Amplified version of this passage defines contentment as “satisfied to the point where I am not disturbed or disquieted”. As we prepare to celebrate a day of Thanksgiving, let us reflect on our past day or week and make a list of the times that our spirit was “disturbed or disquieted”. Now let us ask God to forgive our fleshly trek from contentment and ask the Holy Spirit to restore contentment and peace to our lives. God is not a God of discontentment. When we find ourselves beginning to stray from a contented state of mind, we must look closely to find where Satan is tempting and taunting and attempting to steal from us or destroy our lives (John 10:10). Stand firm. Resist the devil and he WILL flea (James 4:7).

God sacrificed far too much for us – his Son hanging on a cross for the sins of the world – for us to cave into disobedience, discontentment, and despair. And for those issues and problems that tend to tell us that they are impossible to overcome – focus on the last words of this passage of Scripture: “I have strength for all things in Christ Who empowers me [I am ready for anything and equal to anything through Him Who infuses inner strength into me; I am self-sufficient in Christ's sufficiency.” With the indwelling of the Holy Spirit in our lives – God with us – we are truly prepared for every life challenge. Contentment, rule and reign in our hearts and lives. AMEN.

Much To Be Thankful About......

2010-11-24T19:53:00.002-05:00

The low WBC (White Blood Count) and neutropenia of Monday did not agree with me - I was very ill overnight on Monday and yesterday and ended up at my family doctor's office late yesterday. She ordered the complete neutropenic work-up -- blood cultures, urine culture, CBC, and chest x-ray. My family doctor and Infectious Disease doctor decided to add another antibiotic for me since I am really coughing again and am running a fever. So far, the urine and blood cultures are negative. And I did not require a Neupogen today.

My family doctor said all of my many enlarged lymph nodes are already smaller and softer and my spleen has shrunk quite alot since initiating the splenic radiation on November 8. My prayer for this radiation endeavor was to achieve a complete remission as the German study mentions. I have never achieved a complete remission in 14 years of CLL. This looks like it could be my most promising opportunity.

I have not been able to receive radiation since Wednesday, so I will return early Friday morning and if my counts are still improving, I will receive radiation on Friday. Leukemia doesn't take a break even for birthdays or Thanksgiving!

This morning, I took a sputum sample to the hospital. Then I traveled to my oncologists' office and had my labs drawn. Next I proceeded onto the radiation oncologist's office (with my parents who are my dependable chauffeurs).

Praise God! Praise God! All of my counts had improved since Monday. I told my parents it is pretty pitiful when I came out of the doctor's office and gave them "two thumbs up" yet all of my labs remain in the abnormal range except for my White Blood Count), HOWEVER, THE COUNTS HAVE IMPROVED AND WE ARE REASSURED THAT THE RADIATION HAS NOT CAUSING BONE MARROW FAILURE. Thank You, Lord.

A bone marrow biopsy and possibly a high dose steroid boost were planned for next week if my counts continued to decline. Hopefully, both of these things have been avoided. For other leukemia patients considering splenic irradiation, I am convinced that "slow and steady" will win this race - frequent CBC's to pinpoint when the marrow is struggling to produce the blood lines and the willingness of physician and patient to hold on radiation fractions when the counts are struggling.

Thankfully, my milk experiment had boosted my T-Cells because the radiation has really knocked all of my T-Cell counts back. My CD4 count is back to 152 (AIDS patients' CD4 counts are 200 or less, so you can see what leukemia and treatment do to my CD4 Counts), so we have to readdress the PCP prophylactic medication issue again. I will see my Infectious Disease Doctor next week.

My radiation oncologist came in the room smiling and said, "I prayed last night that your counts would turn around before Thanksgiving and they have." I have a NORMAL WBC 7.5! Best of all my lymph percentage (usually 98 or 99%) is 67%! Remember that for me, LYMPHOCYTES=CANCER! (- I have never seen the lymphocytes this low with any of my previous five chemo protocols. Hemoglobin and platelets remain low but a bit better today.

Yesterday, my family doctor ordered me to 6 days of rest. HA! She even had her prescription pad out and said she was going to write a prescription for rest and that I was not to cook Thanksgiving dinner. HAHA!

So, our daughter Stephanie arrived this afternoon, and I sat in my pajamas and gave directions and she did a great job preparing Thanksgiving dinner and we have almost everything prepared. She also set the table for me - I always use my Grandma's china, crystal and silver at holidays, but this year, I had to follow the easy route and bought Thanksgiving paper products. I will be thankful tomorrow night when I would have been hand washing all of those dishes.

My family doctor also told me not to be in crowds right now and to even wear a mask tomorrow with family. There goes my Black Friday shopping - no bargains for me! Thank you for your prayers and continued prayers!

Happy Thanksgiving to my family, friends and medical team!

Urgent Prayer Request & Birthday Reflections: November 22, 2010

2010-11-22T19:56:00.000-05:00

I ask for your prayers tonight. I have not been able to receive my radiation since last Wednesday due to my blood counts being in a downward spiral. For the first time in my life, I actually have a LOW White Blood Count (WBC). I began this foray into radiation with a WBC of nearly 50,000 (normal WBC is 5000-10,000) and today my WBC is 3500. More concerning to me, my hemoglobin and platelets are dropping daily and blood transfusions are looming. I desperately need my bone marrow to kick into action and begin producing blood cells. It is my prayer that the radiation has not permanently damaged my marrow.

Over the weekend, I developed a cough, low-grade fever and a runny nose. Hopefully, this will not require IV antibiotics. The nausea from the radiation has lessened since I have not received it for several days. With Thanksgiving fast approaching, I really do not want to end up in the hospital on a holiday weekend (based on past experiences, the care at hospitals is very poor on holidays when a majority of the best of doctors and nurses have the holidays off).

This weekend I celebrated my birthday. And I don't write "celebrate" without many emotions attached to the word. Unlike most women in this world, I am delighted to grow older - it is better than the alternative of NOT growing old. My family held a birthday celebration for me last night. Lil Man helped Grammy blow out the towering inferno of candles. It is a challenge to comprehend that I was a young mother of three when I was diagnosed with leukemia at age 32 and here I am almost 50 years old, with grown children and a grandson. God certainly has blessed me with many more years of life than was originally predicted for me.

I received a Kindle for my birthday, so I have been busy downloading new books and mastering the Kindle. I also received many other great gifts and cards. Now I don't have to carry my book collection with me to the doctors' offices since I am usually reading 3 to 4 books plus my Bible at any given time. My Kindle will hold 3500 books, so I should never be without a book to fill my solitary moments waiting at doctors' offices!

Thank you for agreeing in prayer with us over these important requests.

Radiation Roller Coaster

2010-11-19T23:16:00.001-05:00

Much has happened in the eleven days since beginning radiation. Many of the changes are difficult for me to interpret yet with such limited data on the use of splenic irradiation with leukemia. Amazingly, today's labs revealed a WBC (White Blood Count) of 6400 - I have never had a WBC that low (even after chemotherapy on 5 different conditions). A portion of my heart wants to leap with excitement at having a normal WBC, yet, I know it is far too early for celebrations. Radiation was again canceled today due to my counts being too low.

Thus far, I have received (3) 50 cGy fractions last week and (1) 25 cGy fraction this week. The plan was for me to have received a cumulative dose of 300 cGy by today, however, I have only received 175 cGy due to the drastic changes in my counts.

I have concerns because it is not as if only the lymphocytes are being eradicated -- all of my counts continue to decrease - is this indicative of failure of the marrow? I am trying to uncover that answer. Of this week's scheduled 3 radiation fractions (doses), I only received a half dose (25 cGy) on Wednesday.

Today my hemoglobin is 3 points less than it was 11 days ago and my platelets are half of what they were 11 days ago. This concerns me that the marrow is struggling to produce blood components. With the loss of another point or so, discussions will begin on blood transfusions, which I hope to avoid due to past serious reactions to blood products. And my platelets are approaching levels, where my doctor has given me warnings not to get cut and to watch for abnormal bleeding since platelets clot our blood.

Last night, my NIH oncologist e-mailed me some information. It is intriguing, however, I have not yet determined what this development of extramedulary hematopoiesis (that he mentioned to me) could mean for me. Basically EMG is when the blood producing capabilites of the bone marrow are relocated to another area - Dr. M speculated that since my marrow is very hypercellular, that the spleen might now be operating as my marrow. Does this possibility mean that I should NOT be receiving splenic irradiation? Will my bone marrow function if the spleen has assumed the role of blood production? I am confused with some of this and need to focus on further research.

I always stand in amazement at the complexities of the human body. Our infinite minds simply cannot conquer all of the questions about the body's functioning, because we are not its Creator. God created the amazing human body and despite the best efforts of brilliant men and women, many questions about the human body never will be answered.

The one other positive lab report that I noted on the CBC today is that there is quite a change in the differential (a differential takes the white blood cells and details how many of each white blood cell line is present). Normally, I have 95 to 99 percent lymphocytes (remember B-lymphocytes are the cancerous cells in my body) and 1-5 percent neutrophils. Today, I have 69% lymphocytes, 29% neutrophils and the remainder in monos, baso, eos (and I usually do not have any of these white blood cell lines on the differential). So, despite the much lower WBC, I am not seriously neutropenic (ANC 1856).

My Absolute Lymphocyte Count (lymphocytes are cancerous) has decreased by 90 percent in 11 days - 43,262 to 4416. I wish I knew how many of these 40,000 lymphocytes were B-Cells and how many were T-Cells (non-cancerous).

We rechecked my immunoglobulins (another measurement of immune function) on Wednesday (IgG, IgA, IgM) and they had improved somewhat since beginning radiation. That was encouraging.

The nausea and fatigue have not been as debilitating this week as last (lower dose) but they are still present and infringing on my quality of life. Given my low energy, I have a seven-day timeline designed to help me have a Thanksgiving dinner on the table by Thursday!

I have been so pleased with the radiation oncologist and his team. He meets with me everyday that I have radiation and is thoughtful and conservative about deciding when/if I will receive the radiation dose. Today, he told me, "Stacie, you told me how you have always really responded to any treatment and how cautiously we would have to proceed - were you right about that!"

And after he and I had reviewed the labs and pondered our next steps, he said, "Wait a minute, I have to check something." And he and some staff returned with a birthday present and card for me. Can you believe that? I wanted to cry. They gave me a garden stone that has HOPE engraved in it. :-)

Tonight I was pondering the complexities and unknowns with this treatment. It came to me, that I am on a radiation bus ride and God is the Bus Driver. At times, fear attempts to creep onto this bus ride with me and tempts me to jump out the door and off the radiation bus. However, if I am truly trusting this "Bus Driver", I will just remain on the "bus" and trust Him to deliver me to my ultimate destination. If I was on a bus, I would not have to know all of the details, routes, directions, and stops because the bus driver would have all of that information and I could sleep all the way to my destination and that driver would deliver me. Why should this "ride" be any different? I do not have all of the answers, details, outcomes, or facts about this radiation, yet, if I am trusting God to drive me through it, I will have to sit back and trust Him. That is what I am reminding myself daily.

Please pray:

-That God will protect me from infections.
-That God will continue to bless my medical team with the wisdom that they need to make the best recommendations for me.
-That God will restore all of my counts to normal levels.
-That no matter where my body is producing blood cells for me (marrow, spleen), that God can work all of that together for good to help me and not harm me.
-That God will allow me to feel better.

Day Four Radiation: Cancelled

2010-11-15T20:40:00.000-05:00

I went to radiation today and my blood counts were too low to receive today's treatment. Day Four Radiation: Cancelled! My radiation oncologist called me back and I knew it was not good news because I usually see him after the radiation. He said he had already planned to cut the dose by half today to 25 cGy (based on Friday's counts), but with the counts declining still, we discussed my options and decided to cancel today's treatment.

To me, we need to know if marrow failure has been induced - if these counts continue to decline without radiation, I am going to be quite concerned and will request a bone marrow biopsy (one must be desperate for information to request this painful procedure). Although the counts are low, I know that I can survive with them at these levels - I don't intend to keep forging ahead with radiation and risk marrow failure where my counts will no longer support human life. I won't be surprised if radiation is delayed again on Wednesday.

The radiation oncologist was concerned about how I am feeling - the uric acid level was improved, so he said the nausea and fatigue don't appear to be tumor lysis driven, but he ordered a CMP on Wednesday to look at those counts. He told me that he will go to the ends of the earth to help me. He is a very kind doctor and I believe he is watching out for my well-being. He gave me a prescription for anti-nausea medicine, however, I plan to continue with my holistic approach to treating the ongoing nausea (Sea Bands, crystallized ginger, and ginger ale) unless the nausea worsens and demands stronger treatment.

Radiation Day Three: Update Delayed

2010-11-14T12:07:00.001-05:00

I have not felt well since Friday's third radiation treatment, thus the delay with the update. Nausea has struck and even using my ginger and Sea Bands has done little to relieve it. I have also been very, very tired. I have remained in my pajamas all weekend, which I rarely ever will do.

On Friday, my labs revealed that all of my counts had worsened. This is concerning as we are treading a fine line of using the radiation to eradicate leukemia cells without further harming my bone marrow. White cells, red cells, hemoglobin, platelets - all had declined. I was quite neutropenic (low white cells that fight infection), so I was instructed to begin three days of Neupogen injections.

My creatinine level worsened (measure of kidney function), so that is a bit concerning. We know that my left kidney is in the radiation field and is being irradiated along with the spleen. I realized this week how difficult my decision making process has become when I choose to irradiate a perfectly normal kidney in order to attempt to improve my health.

I have e-mailed my radiation oncologist to inquire if I have already reached the point of needing to reduce the radiation dosage from 50 cGy to 25 cGy? The other option I have pondered is if I could continue with the larger dose, but transition to two treatments (versus three) per week.

Please keep me in your prayers. Hopefully, my counts will improve tomorrow.

Radiation Day Two

2010-11-10T20:54:00.000-05:00

ZAP! NUKE! This afternoon, I received my second dose of splenic irradiation. Earlier in the day I spoke with my long-time NIH physician (Dr. M). I believe he is pleased how this treatment has been managed and is optimistic with me that I might benefit from the radiation. We discussed the value of this treatment being written up as a case study for the medical journals. There is limited, current data on this type of leukemia being treated with splenic irradiation. I told my radiation oncologist today what Dr. M had stated and he replied, "What else needs written up for the journals is how you have grabbed this bull by the horns, educated yourself, plotted your own treatment courses and survived for over 14 years!"

I believe this will be the most difficult of all of the treatments I have received to determine if and when and how it has benefited me. Today, after one fraction (session) of radiation, my total WBC (White Blood Count) dropped from 44,600 (normal WBC is 5000-10,000) to 29,000. That is a substantial decline. Hemoglobin declined (not such a good sign) by a point and my platelets increased (good sign). It is far too early to evaluate if I am improving. When I calculated the absolute numbers of lymphocytes (most of my B lynmphocytes are cancerous white blood cells; T lymphocytes are white cells I always need to increase), the ALC (Absolute Lymphocyte Count) declined from 43,262 to 27,342. Hopefully, these 15,000+ cells were all cancerous lymphocytes!

It will be a delicate balance of eradicating leukemia without damaging my limited marrow function. I must totally trust God with such intricate details! Tonight, I am a bit nauseated. The radiation oncologist told me today that the spleen is a large field to radiate, so he anticipates nausea for me. The left kidney is in the radiation field, so I know that it is being irradiated, as well. Please pray that my kidney function will be protected.

After radiation, I saw my family physician and had my electro-acupuncture. I will share my laugh of the day. You might recall the "Radiation Princess" post from Sunday that described my costume with fluorescent green highlights, lipstick and nail polish. After three days of nail polish remover and every other cleaner known to mankind, my nails remain stained from the green polish - they actually have a bluish tinge. My nurse came into the room and when she looked down, she shockingly said, "Doctor, come here and see Stacie's nail beds - they are blue!" She was truly concerned something was wrong and I began laughing and told her it was no lack of oxygen causing the blue tinge, but the residue from my Harvest Party cosmetics!

I will try to post on Friday after my third day of radiation. Watch for this impressive medical outcome coming to a medical journal near you! Thank you for your prayers.

Day One Radiation: Over!

2010-11-08T19:28:00.000-05:00

Thank you for your prayers today. Dad, Mom and I left home at 7:30 AM and Kevin and I returned home at 5:30 PM. IVIG went well today and our Nurse Practitioner daughter spent the day with me and brought me a healthy vegetarian lunch to enjoy. At the end of the day, our daughter who is the dietitian at the hospital where the cancer center is located, stopped by and the twins went with me to Day One of radiation. Well, more specifically, they sat in the waiting room - I guess they didn't embrace the idea of going into the treatment room with me to be nuked! Where is their sense of adventure? Our youngest daughter checked in with phone calls and sending me "medicine" (aka pics of Lil Man) to my cell phone.

Speaking of "nuked", last night our family held our annual Fall Costume Party and Bonfire. I decided that the opportunity to dress as the "Radiation Princess" might only present itself once in a lifetime. So I purchased a long, flowing black wig with fluorescent highlights. I added fluorescent green nail polish and lipstick. I printed radiation warning signs off of the Internet and onto iron-on transfer paper and ironed them all over my clothes (See Photo Above). I told my oncology nurses this morning that if I had not received IVIG all day before radiation, the "Radiation Princess" might have shown up for Day One of radiation. The nurse told me, "If you had walked in like that, Stac, we would have thought you finally cracked!"

After the many times I have received treatment for the leukemia, the first radiation was a bit anti-climatic. The actual radiation process is completely painless. I thought I might feel warmth on my skin since I was told that I might develop like a sunburn on my skin from the treatments and I have to apply aloe vera gel twice daily. But I felt nothing. My son-in-law had uploaded my favorite praise and worship music on my smart phone and I put in my ear buds, held an anointed prayer cloth from Israel in my hands, and prayed for the few minutes that the radiation was administered. The bulk of the time was spent with the radiation technicians placing me in the precise position for the radiation. We are talking moving me by centimeters until my tattoo markings line up specifically with their lasers and other placement techniques.

The radiation oncologist told me that side effects will be cumulative as the amount of radiation I have received increases. He tended to think by next week, we will need to begin watching my counts more closely. My counts were a bit lower today and I was slightly neutropenic, so I am hopeful that the counts will improve and not nose-dive. Again, the doctor mentioned the possibility of fatigue, nausea, diarrhea and skin irritation. I am focused on the benefits - not side effects - nuking leukemia cells and driving them from my spleen, lymph nodes, bone marrow and blood. I pray this radiation has the ability of a smart bomb and can hone in on the leukemia cells, annihilate them, and leave no collateral damage. That is how I am envisioning this attack that we have launched.

So far tonight, the only thing I can report is a nagging unrest. The first drips of chemotherapy into my veins triggered an unexpected flow of tears and emotions over eight years ago. Radiation is a new territory for me to explore and I believe there is always some unrest with the unknown. And although my limited, physical mind does not know or understand everything that is happening with the radiation, my spiritual mind is trusting that the God who created my body is still in control.

Interestingly, this morning, the manager of the cancer infusion center approached me and asked me to participate in a study being conducted by a local university. The study, "Spirituality and Cancer" sounded intriguing to me, so I signed the consent form. One of the principal investigators arrived with questionnaires in tow. I spent an hour or two this morning completing them - the entire time I was being reminded of what a tremendous role God has played in my life and my cancer journey. The investigator returned and asked to proceed and complete a 30 minute interview, which is also part of the study. So, for 30 minutes, I sat and shared about the Lord and all the many ways He has guided, blessed, comforted, strengthened and healed me during this journey. Upon reflection, I realized this God-opportunity came on just the right day as it provided a time of distraction for me as I awaited my first radiation treatment. I was able to share about the Lord in a very unique manner. I am blessed.

Prayers Requested

2010-11-07T13:11:00.000-05:00

I type on the eve of an important day of my leukemia journey. Tomorrow, after I receive my eight-hour IVIG treatment at the cancer center, I will go to the radiation center for my first treatment. In 14 years of leukemia, I have not received radiation. With the onslaught of new chemotherapies and immunotherapies, the use of radiation with this leukemia, has lost favor. However, in my opinion (and the opinions of my most respected physicians), I believe it still possesses value for some patients such as myself. We know that almost any standard chemotherapy will not be survivable for me. We know that all oral and IV medications pose the risk of anaphylactic drug reactions for me. Yet, we also are vividly aware that if I do not reduce my tumor load, that I am going to lose this hard-fought battle.

For most of the two or three years that I have researched the use of splenic irradiation, I believed that it really only had potential for palliative relief of pain from the very enlarged spleen. Now, we believe that by reducing the spleen and tumor load, that my rate of infections could decrease. That would be a welcome improvement after this past year. A recent German study also showed other biological mechanisms by which the radiation has the potential to reduce the size of the spleen and the enlarged lymph nodes as well as reducing the tumor load in the bone marrow. Complete hematological remissions have been achieved with splenic irradiation - that is my hope and prayer for me.

Tomorrow will be an arduous day. I would have preferred to remain busy all day before the first radiation treatment versus sitting in the IV chair all day - with nothing much else to do but pray and ponder the possibilities. Learning that the walls of the room where I will receive my treatments are made of 3 feet of steel, did little to comfort me. It takes 3 feet of steel to protect everyone else from the very rays that my body will be absorbing.

Some have asked for specific prayers that I need - here are those needs:
-For the radiation to help me and not to harm me
-For me to FINALLY achieve a complete remission - doubtful from a medical viewpoint, but not impossible with God!
-For God to protect my very compromised bone marrow from bone marrow failure and for my blood counts to return to normal
-For God to protect my immune system and guard me from infections
-For wisdom and compassion for those who will be treating me - wisdom especially those who will calculate the doses of radiation
-For the side effects to be minimal so that I can continue with my daily tasks and enjoy my upcoming birthday and holidays

Other patients have also inquired about what alternative therapies I will use while undergoing radiation. The additions to my already extensive alternative protocol include:

-Shark liver oil / Alkyglycerols (Just call me JAWS!). This can prevent severe reduction in WBC during radiation. It has immune enhancing effects and can increase survival of radiation patients.
-Ginger (anti-nausea)
-Grapeseed Extract
-Extra Vitamin C. Reduces side effects for radiation patients.
-Extra beta-carotene
-Maitake MD Fraction
-Vitamin A - can enhance the effectiveness of radiation. Increases the sensitivity of the cancerous cells to the radiation. Improved survival rates.

Of what I was already using, that also has value with radiation:
-Electroacupuncture
-Curcumin. Helps to protect healthy cells from the side effects of radiation.
-Green Tea Extract. Makes cancer cells more sensitive to radiation.
-Aged Garlic
-Selenium
-Whey Protein. Helps to reduce pain during radiation.
-Fish Oil. Improves selective killing of cancer by radiation.
-Probiotics
-Coenzyme Q10
-Melatonin. Longer survival rates and fewer side effects with radiation.
-Barley Grass / Green Drinks - twice daily.

(Supplement guidance from my own family physician and Drs. Keith Block and Micheal Murray - both experts in the field of integrative oncology.)

Worth Pondering

2010-11-06T22:59:00.000-04:00

"Heaven is not here, it's There. If we were given all we wanted here, our hearts would settle for this world rather than the next. God is forever luring us up and away from this one,

wooing us to Himself and His still invisible Kingdom,

where we will certainly find what we so keenly long for."

--Elisabeth Elliot

"There is nothing that we can see on earth which does not either show the wretchedness of man or the mercy of God. One either sees the powerlessness of man without God, or the strength of man with God."

--Blaise Pascal

"The greatest proof of Christianity for others is not how far a man can logically analyze his reasons for believing, but how far in practice he will stake his life on his belief."

--T.S. Eliot

"The tragedy of life and of the world is not that men do not know God; the tragedy is that, knowing Him, they still insist on going their own way."

--William Barclay

"Our life is full of brokenness - broken relationships, broken promises, broken expectations. How can we live with that brokenness without becoming bitter and resentful except by returning again and again to God's faithful presence in our lives."

--Henri Nouwen

Radiation Approved

2010-11-05T20:37:00.001-04:00

After a half dozen or so e-mails from my insurance case manager, she finally called at 1 PM today to tell me that the reviewing physician had deemed me worthy of receiving the radiation! She is such a blessing to help me - even on her day off. Thanks, Melanie!

I spent about an hour today at the Radiation Center to finalize all of the plans. More permanent tattoos were applied. My abdomen looks like a treasure map with "X" truly marking the spot! The two radiation technologists worked and double checked all of my measurements of the field. They took additional x-rays for the physicist to use to finalize the dosing plans. They took photographs of the field and walked me through the entire process.

I decided I needed some photos of the equipment for the enquiring minds who want to see what I will be doing, beginning on Monday. This photo is of the radiation equipment - a linear accelerator. Since I will receive radiation from the front and back of my spleen, this machine can rotate all around this table. The table can lift and lower. I just lay there and try not to move. You can see at the one end of the (very firm) table, the support block that my head and neck are put in to get me in a stabilized position. This is what they made for me last week.

This second photograph is my viewpoint from the bed when the machine is not over me - I asked for a mountain view room! For the life of me, I don't comprehend why cancer patients have to look at fake scenery. Almost every cancer center I have gone to, has had some sort of these visual distractions. That is the only terminology I can think of that adequately describes it to me. When I am receiving chemotherapy or radiation, looking at a mountain view or gazing up through a canopy of autumn leaves does not make me imagine for one instant that I am strolling through the park or traversing the mountains. Maybe visualization like that works for some, but I am a black and white type personality and I see it for what it is - a looming piece of equipment about to zap my body with radiation - not a piece of equipment that is minimized by the mountain view. Enjoy the scenery!

No Insurance Response: May I Vent Tonight?

2010-11-04T21:00:00.000-04:00

The insurance promised that our expedited request for approval for the splenic irradiation would be in our hands by 4 PM today. It is almost 9 PM and I just heard from my insurance case manager and the reviewing physician still has not given her an answer. A doctor in Arizona has information from several of my trusted physicians, trying to determine without ever seeing me, if I am deserving of his approval for the radiation. This entire process is maddening for patients and physicians alike. In a million years, no one will ever convince me that with medical matters as serious as this, that a long-distance physician who looks at a pile of papers is competent and capable to determine if I receive any given treatment or not.

Appointments await me TOMORROW to complete the planning and simulation session for the radiation. I suppose the reviewing physician will wait until the very last moment and notify me. If the decision is to decline payment for the radiation, I will be forced to cancel the appointments at the last minute tomorrow.

In the last year, this process has denied syringes that I require for the two IV medications to be inserted into my sinuses. So, we are paying for the syringes ($100 per month). If my doctor had not researched and found this method for me to receive these two drugs, the insurance would be paying for two daily IV's instead - and I can guarantee them that two daily IV's would cost them much more than $100 per month. Multiple appeals have failed.

The reviewing physician initially rejected the IV antifungal that I needed for a pulmonary fungal infection. My doctors battled an appeal through and did obtain coverage for the IV's.

The insurance has twice rejected the requests to pay for the milk that has benefited my immune system. I have not been in the hospital or for outpatient IV's for almost a month now that I have been drinking milk. Given that the last week in ICU cost the insurance over $30,000, one would think that purchasing milk for me would be a no-brainer.

And now we sit and wait to see what treatment the physician reviewer deems me worthy of receiving. I am so disappointed at what health care in America is coming to - and it is only going to worsen. Perhaps you or a loved one has never been faced with these scenarios, but take my word, if you are faced with a serious illness, you will be shocked at what the "insurance gods" will put you through. I am knowledgeable about my condition and care and I am very organized. Yet, at times, all of this insurance mayhem is overwhelming.

I am certain, on paper, my life does not look worthy of salvaging with another expensive treatment when the reviewer reads terminology such as "end stage disease" and "a year to months to live" in my records.

Just ask Lil Man what his Grammy's life is worth!

Inching Toward Radiation: November 2, 2010

2010-11-02T21:35:00.000-04:00

All of my clinical information is in the hands of the insurance physician reviewer. They have requested an expedited review and supposedly, Anthem BCBS will give us an answer on the splenic irradiation before late Thursday. Friday afternoon is when my next appointment at the radiation oncologist's office is scheduled. The remainder of the radiation planning and simulation before Monday's treatment will occur on Friday.

The CT Scan revealed somethings that we knew and somethings that we did not know. My spleen, as expected, is "markedly enlarged" - a normal spleen is around 8-9 cm in length and my spleen was around 28 cm in length. The amount of lymphadenopathy (enlarged lymph nodes) was also increased from my 2009 CT Scan, mainly the retroperitoneal (back of the abdomen). My non-medical daughter said that readers don't understand the medical terms, so I have been trying to provide descriptions/definititions.

What we did not know is that the CT revealed an internal hernia. My doctor believes that the very enlarged spleen probably caused this hernia. As long as I do not develop a bowel obstruction, we will just keep an eye on the internal hernia. Also noted, were a pericardial effusion and a pleural effusion (right lung). Basically these terms refer to fluid around my heart and lung. I need to do further research to determine the causes of these findings and what needs to be done. I have read that fungal infections and the leukemia itself can cause these symptoms. Hopefully, neither of these causes will be discovered as the causes of these effusions. (Maybe I have just sprung a leak!)

I continue to have additional days without IV antibiotics or antifungals. My Mighty Milk Experiment #2 combined with the herbal additions seem to be working for me. I still have had times of fever but they are not consistent.

I received my first of four doses of the HiB vaccine on Monday and that went well, without reactions. And I did not require Neupogen injections this past week.

Fall Foliage

2010-10-31T16:16:00.000-04:00

You Were Working for Me

2010-10-31T16:12:00.000-04:00

You Were Working For Me
Mark Bishop
Centergy Music/Possum Run Music BMI

Verse 1
She picked the tip up off the table,
Wiped her forehead with her sleeve.
Another tray of dirty dishes, and it's time for her to leave.
She clocks out and says 'good night ya'll',
Looks out at the road ahead.
When she pulls into the drive, it's time to put the kids in bed.

Verse 2
I hope you know your mother loves you.
Oh you know, we know you do.
We tried to clean the house, and we did all our homework too.
Mom, I hope you feel real special, cause anyone can see,
You're not working for the money, you're working for a family.

Chorus
Yeah, you're working for me.
And you're paying the price.
And I'll never forget how much you gave,
or how much you sacrificed.
And I'm gonna pay you back someday, you'll see.
For all that you gave up, when you were working for me.

Verse 3
One last time she goes to visit, and she's holding back the tears.
The doctor says, "It won't be long. Your mother's getting up in years."
I hope you know your daughter loves you,
Oh you know, I know you do.
She strokes her hair and smiles and holds her hand the whole night through.

Verse 4
Then somewhere in the morning, just before the break of day.
A mother's fingers lose their grip, and a last breath slips away.
And the hard life she held on to, she turns loose and lets it go.
Then a gentle voice says "Come on home, in case you didn't know."

2nd Chorus
You were working for me.
And you paid the price.
And I didn't forget how much you gave,
or how much you sacrificed.
Now it's time to pay you back,
Oh you're gonna see.
For all that you gave up,
When you were working for me.

Tag
And I know sometimes it seemed like you were working for free,
But you were working for me. You were working for me.

To View the Video go to: http://www.youtube.com/watch?v=rHx4tLdWRYA

Autumn colors

2010-10-29T23:59:00.000-04:00

Marriage: For Better, For Worse

2010-10-29T22:48:00.002-04:00

On the eve of our 28th wedding anniversary, the article below offers much good advice. I am well aware that 28 years is almost an eternity when compared to the trend of disposable marriages. Divorce looms, waiting to pounce, on marriages everyday, everywhere.

Recently, I read this very good article on the http://www.marriagetoday.com/ website. I enjoy this couple's teaching and believe that a nugget of their advice can improve almost any marriage. Check out their site.

I realize that many readers will be divorced and this post is no way in judgment of you. God is forgiving of all of our failures and sins and divorce is no exception.

The Lie of Easy Divorce
(And the Research That Proves It)

For those who consider divorce to be an easy answer to marriage problems - there is an increasing amount of evidence to the contrary. First of all, the damage done by divorce is devastating. Research has proven that the damage of divorce on children not only lasts for a lifetime, but is also transferred to their children. Adults tell me that going through a divorce is worse than death. Businesses experience up to two years in lost productivity from employees going through a divorce.

Also, more recent research proves that the vast majority of people who divorce are no happier than unhappy couples who stay married. The reason for this is because when divorce occurs - you simply exchange one set of problems for new ones.

Another fascinating discovery is that among unhappy couples who stayed married five years - later almost eighty percent rated their marriages as happy. The greatest turnaround was reported by couples who were the unhappiest five years earlier.

No fault divorce came to us with the promise that it would make divorce less common and less painful. What a lie! Divorce has become an epidemic and it is still devastating. The legal conveniences of no fault divorce can in no way counteract the serious emotional consequences on adults and children.

In fact, the greatest marriages I've ever seen are those that have gone through very difficult times and have lasted through them.

Every marriage goes through difficult times. In fact, the greatest marriages I've ever seen are those that have gone through very difficult times and have lasted through them. This is certainly true for Karen and me. We have now been married for thirty-three years and have a great marriage. On the way here, we've had some very tough times and were on the brink of divorce almost thirty years ago. The choice to stay together has paid huge dividends.

If you want to have a happy life and marriage - lose the word divorce and don't believe the lie that it brings happiness. In most cases, divorce is the answer to marriage problems in the same way that cutting your arm off is the answer to a broken bone.

Our society is reeling under the effects of broken homes and broken hearts. Many today are fearful of getting married because of all the pain they see. The truth is - marriage works when you enter into it with a firm commitment. The vows we say during our wedding ceremonies are designed for this purpose. When we say, "For better or worse, richer or poorer, in sickness and in health, til death do us part...", we are making an essential commitment that lays a firm foundation for a successful marriage.

These vows worked for many years in our country until the lie of easy divorce took hold. Since then, it has been a trail of tears. Spare yourself the heartache. Tough it out...and when the devil tells you the lie about easy divorce - don't believe it.

Journey Toward Radiation

2010-10-29T21:05:00.000-04:00

I continue on my road to radiation. Today, I had my CT for the initial planning for splenic irradiation - I am sporting some new tattoos on my stomach (never thought I would have a tattoo) but these are necessary to position me in the exact position for the radiation each time.

They formed a structure (block) that will stabilize my body during the irradiation. That was fascinating - initially this material looked and felt like a bean bag- the radiation techs pushed and pulled and molded this bean bag around me - then they suctioned the air out of the bag and it became as hard as concrete. Pretty nifty! Next Friday, I will return for my final session of planning and a simulation session. Tentatively, November 8th is my "go" date" if insurance approves.

Here is today's funny story that I should not tell on myself. I was returning home from the radiation appointment today. I was going to pick up one of our sons-in-law on my way. I turned off a main street and normally go through two intersections and then turn north to reach their home. I was extremely tired and a bit unnerved still from the prospect of radiation and I only drove through one intersection and turned right.

Not long after turning, a man in a truck slowed down and he was shouting out his window at me and waving his arms. I dismissed him as a possible lunatic and kept driving. Then a car passed and kept honking and honking at me. They didn't look like family or friends trying to gain my attention, so I kept driving. Suddenly, I looked up and I was going the wrong way on a one way street. I had driven six blocks going the wrong direction! It was just the icing on the cake for the day. I laughed and laughed outloud and probably looked like a lunatic myself. Thank God I didn't kill someone or myself. God even protects us when we are ignorant - always good to know!

Splenic Irradiation Update: October 28, 2010

2010-10-28T22:32:00.000-04:00

I am home, exhausted both physically and emotionally. I left home at 2 for my appointment with the radiation oncologist and did not leave there until after 5 then had dinner and went to the cancer support group and arrived home at 9.

What a compassionate, kind, educated man was the radiation oncologist. His training was completed at Mayo Clinic. Not only was his compassion amazing, he was very informative and helpful. He had reviewed almost a 5" binder of my records (and asked to keep it to finish his review). He had reviewed studies, etc. that I provided. He is in agreement that splenic irradiation is my best (and perhaps only) treatment option. I will have a planning CT tomorrow and then he will present the information to my insurance case manager. She is going to expedite the physician review, so we anticipate an answer by mid-week. November 8th is the target date to begin my radiation and I will go three times per week for 4-8 weeks, depending how well I tolerate it. 600 cGy is the goal we have for my cumulative dose of radiation.

After much discussion and debate, the radiation oncologist believes that I should begin with the 50 cGy fractions (versus the 25 cGy fractions). A fraction is a radiation dose/session. He said perhaps we will maintain that dose for a week but if I am tolerating it, we may continue. He will perform a CBC, CMP and uric acid check M-W-F on radiation days to watch for cytopenias (low platelets, neutrophils, hemoglobin) and indications of tumor lysis syndrome (possible with radiation as with chemo/immunotherapy). Tumor lysis syndrome can develop when the kill-off cancer cells is rapid and the kidneys cannot filter the killed cells and this can be fatal. Many people are able to take a medication to prevent it (Allopurinol) but I cannot take it because of my past drug reactions.

He said he would probably recommend anti-nausea medicines and I told him I have never taken them with chemo and would prefer to use my Sea-Bands and ginger. He agreed. He said he had no problem with my alternative treatments/supplements. Hurrah!

He said side effects could include nausea and fatigue but it will depend upon how low the spleen is when we begin radiation. He expects 1 month after completion of radiation for total recovery.

I had an interesting experience this evening - a God experience, I would say. Our daughter is a dietitian at the hospital where I will receive radiation. She was leading the Cancer Support Group tonight, so I attended. I asked myself why I was going because I have never gone to a cancer support group. Now I know why! The physicist (calculates radiation doses, etc.) came before the meeting and asked if anyone was going to begin radiation and he took me through all of the computer systems, the IMRT planning program, the equipment, etc. It was a helpful behind the scenes view of the radiation department. My daughter told him I was her Mom and asked him to take good care of me.

I shocked myself. When we went into the actual radiation room, my legs began shaking, my palms were sweaty and I felt like I was going to burst into tears. It was just a rush of emotion that I have never experienced except on the first day of chemo in 2002.

When the meeting was over, I went with my daughter to her office. The CEO and COO of the hospital were there and she introduced me to them.

I am a bit concerned - temperature was 99 today at their office. I had green drainage from sinuses and lungs today. They discontinued the Neupogen today because after 3 of the 5 injections, my ANC (Absolute Neutrophil Count - neutrophils fight infection) went from 500 to 10,000! Pretty good production for marrow operating on 2% without leukemia infiltration.

I am so exhausted but wanted to post my update. I have deposited all of this at the foot of the cross. I believe and am asking God if I am not to proceed with radiation that he use an insurance rejection to stop it. I will wait patiently.

Global Repentance

2010-10-27T21:28:00.000-04:00

I Chronicles 16:23-24
“Sing to the LORD, all the earth; proclaim his salvation day after day. Declare his glory among the nations, his marvelous deeds among all peoples.”

I continue to be amazed at how God can take a humble blog and use it to touch hearts around the globe. I am able to check the country of origination of people reading my blog (through my blog statistics). I sit here tonight, praying, typing, asking God for the words to write. Knowing that He has beloved children around the world, who read my blog, intensifies my desire and purpose to deliver knowledge of God through this blog.
2 Timothy 4:17
“But the Lord stood at my side and gave me strength, so that through me the message might be fully proclaimed and all might hear it…”

Readers in Russia, China, India, United Arab Emirates, and dozens of other countries are as dear to God as I am to Him. He is no respector of people – He loves me no more than He loves YOU! He desires a personal relationship with each of His children, no matter their nationality, their ventures into false religion, or their lack of knowledge of Him. Perhaps owning or reading a Bible is a life-risking scenario for some of these dear people. Yet, we are told that the Gospel will be taken to every inch of the planet earth before Christ returns. He is not willing for any soul to perish and spend eternity in the pits of hell. He is full of compassion and grace. God is not just the God of America!

For those without a Bible, I share these divinely inspired Words from God with you. Read them. Pray them. Absorb them into your mind and soul. Allow them to transform your life. Find repentance and forgiveness in these Words. Realize that God is God of all – American, Russian, Indian, China, Iranian, North Korean – there is not one that He does not love and desire to be his or her Savior and extend the gift of eternal life in Heaven.

Exodus 19:5
“…Although the whole earth is mine”

II Kings 19:19
“Now, O LORD our God, deliver us from his hand, so that all kingdoms on earth may know that you alone, O LORD, are God.”

Nehemiah 9:6
“You alone are the LORD. You made the heavens, even the highest heavens, and all their starry host, the earth and all that is on it, the seas and all that is in them. You give life to everything, and the multitudes of heaven worship you.”

Psalm 86:9
“All the nations you have made will come and worship before you, O Lord; they will bring glory to your name.”

Ezekiel 36:23
“I will show the holiness of my great name, which has been profaned among the nations, the name you have profaned among them. Then the nations will know that I am the LORD, declares the Sovereign LORD, when I show myself holy through you before their eyes.”

Daniel 7:13-14
“In my vision at night I looked, and there before me was one like a son of man, coming with the clouds of heaven. He approached the Ancient of Days and was led into his presence. He was given authority, glory and sovereign power; all peoples, nations and men of every language worshiped him…”

Habakkuk 2:14
“For the earth will be filled with the knowledge of the glory of the LORD, as the waters cover the sea.”

Zechariah 14:9
“The LORD will be king over the whole earth. On that day there will be one LORD, and his name the only name.”

Matthew 28:19
“Therefore go and make disciples of all nations, baptizing them in the name of the Father and of the Son and of the Holy Spirit”

Mark 13:10
"And the gospel must first be preached to all nations.”

John 3:16-17
“For God so loved the world that he gave his one and only Son, that whoever believes in him shall not perish but have eternal life. For God did not send his Son into the world to condemn the world, but to save the world through him.”

1 Corinthians 10:26
“…"The earth is the Lord's, and everything in it.”

2 Corinthians 5:19
“that God was reconciling the world to himself in Christ...”

Philippians 2:10
“that at the name of Jesus every knee should bow, in heaven and on earth and under the earth”

Colossians 1:6
“… All over the world this gospel is bearing fruit and growing…”

I John 4:14
“And we have seen and testify that the Father has sent his Son to be the Savior of the world.”

Jude 1:25
“to the only God our Savior be glory, majesty, power and authority, through Jesus Christ our Lord, before all ages, now and forevermore! Amen.”

Perhaps a reader – American or Russian, Indian or Chinese – has never paused for a moment to consider the greatness of the universe, created by the hand of God. Perhaps he has not considered the complexities of his own body and how God’s created man (and woman) hold mysteries that the minds of medicine will never understand or comprehend. Perhaps he believes his sins are too wretched for a perfect God to love, accept, and forgive him. Perhaps he has been blinded by false religions and teachings that have separated him from God. Perhaps a Bible will never rest in the hands of someone in a country where Christians are persecuted.

There are no “perhaps” with God – He will see to it that the Gospel is taken to the entire world and its inhabitants. He will forgive the most grievous of sins. He will flood a repentant heart with love and peace beyond description. He will love each one who seeks Him and finds Him. He will offer the gift of salvation – life eternal in Heaven when we depart from this earth. He will seek those who are lost.

In closing, consider Scripture from the Amplified translation (Matthew 18:11-14):

“For the Son of man came to save from the penalty of eternal death that which was lost.

What do you think? If a man has a hundred sheep, and one of them has gone astray and gets lost, will he not leave the ninety-nine on the mountain and go in search of the one that is lost?

And if it should be that he finds it, truly I say to you, He rejoices more over it than over the ninety-nine that did not get lost.

Just so it is not the will of My Father Who is in heaven that one of these little ones should be lost and perish.”

Lost sheep of the world, God the Shepherd is searching for YOU! Please pray this prayer of forgiveness and salvation:
Gracious Father,

I admit that I am a sinner. I am sorry for my sins. I believe that You sent Your Son, Jesus, to this earth to die on a cross for the sins of the world. Forgive me, Father. Come and live in my heart. I love You, Lord. I believe!

In Jesus’ Name I pray. AMEN.

(If you are a believer in Christ who reads this blog, please take a moment and post a comment with this post - words of encouragement and Scriptures to share with our brothers and sisters around the world.)

Pay Attention

2010-10-27T20:23:00.000-04:00

Hebrews 2:1
“We must pay more careful attention, therefore, to what we have heard, so that we do not drift away.”

Do you sense yourself drifting away from God? Are the waves of life despair, doubt, and anger pulling you from the Source of your solutions? Hebrews 2:1 offers us succinct instruction as to what we should do to prevent such self-inflicted separation from God.

“Pay more careful attention” – once I received this instruction from His Word, my life changed. Careful, dedicated, focus study of God’s Words and time spent in prayer in His presence are life changing habits to develop. Guarding what words went into my eyes, ears, brain and ultimately my soul transformed my life. We cannot live victorious Christian lives and never spend a moment in His Word or in prayer.

I prefer the Amplified Bible’s version of Hebrews 4:12: “For the Word that God speaks is alive and full of power [making it active, operative, energizing, and effective]; it is sharper than any two-edged sword, penetrating to the dividing line of the breath of life (soul) and [the immortal] spirit, and of joints and marrow [of the deepest parts of our nature], exposing and sifting and analyzing and judging the very thoughts and purposes of the heart.”

When we do not realize the power and purposes of God’s Word, we cannot realize how to live our lives. His Word exposes sin in our lives and convicts our spirits when we make spiritual mistakes. His Word is “alive and full of power” – the bound, typed words of the Holy Bible are not like any other written words – they are “alive and full of power”. Power to change lives, relationships, eternal destinations and hearts – all are possible when we feast on the Word of God.

When we neglect our relationship with God – we will drift away. "Drift" has several definitions – move aimlessly, wander from set course or position, and change gradually. I believe each of these definitions defines specific aspects of our drifting and wandering from the Lord.

When we do not nurture our relationship with God, the Anchor of our soul is lifted and we began to float aimlessly. There is no purpose or direction for our lives. We sense emptiness in our souls. Life challenges become more impossible to handle without the help and guidance of the Holy Spirit.

God has set a specific purpose and path for each of our lives. Without daily time spent in Bible study and prayer, we begin to wander from our set paths. Wanderers do not have a destination, they meander through life aimlessly. And the enemy of our souls – the thief, Satan – prepares to pounce. John 10:10 states: “The thief does not come except to steal, and to kill, and to destroy. I have come that they may have life, and that they may have it more abundantly.”

God did not make the gift of salvation or a loving relationship with the God of the Universe to be difficult or impossible. Jesus came so that we may have life – true life – not just a physical existence but a spiritual, personal walk with God. He promises us abundant life – a well-supplied life. And I am not just suggesting material blessings although God tends to the needs of His own. A well-supplied life that is full and complete and a heart without emptiness is worth more than silver or gold. His peace being supplied in a stormy season of life is priceless. Guidance and discernment from the Holy Spirit or from reading His Holy Word is invaluable.

Are you ready to turn the tide of your life? Begin paying attention – not to your problems, selfish wishes and wants, life pleasures, or desires – but pay attention to God’s Word. You cannot turn the tide of your life alone – call upon the Captain of your life ship. Humble yourself before Him. Relinquish the trappings of this world. Realize how damaging sin is to your life. Repent. God is still in the business of forgiving the worst of sinners and softening the hardest of hearts.

An Update & Request for Prayer: October 27, 2010

2010-10-27T19:17:00.001-04:00

Tomorrow is my appointment with the radiation oncologist. He is going to love my three typed pages of questions! I am praying for clarity and discernment.

I have been running fevers since Monday - the doctor believes it is from the Prevnar vaccine on Monday - babies run fevers with these same vaccines. So "Baby Stacie" who drinks her baby milk, now is running fevers with her baby vaccines. :-)

I have been having dizzy spells for a couple of months. Today the doctor diagnosed it as positional vertigo - it is caused by crystals lodging in a portion of the ear - she had several maneuvers that she taught me to try to at home for relief. I hope that will work and dislodge the crystals. I have had three near falls in the past week from these spells.

This is Day 3 of 5 of Neupogen injections - Neupogen always gives me bone pain but this round has been horrible. I wore multiple pain patches last night and still no relief. I was grateful today was acupuncture.

I will tell you a funny story about my acupuncture. To set the scenario for you - the table is raised up in the air approximately 5'. I have 50 or 60 needles in me and the door is shut. Normally, the doctor gives me a

buzzer with a bell that I ring when my times goes off and then the nurse returns to remove the needles. My timer went off today and I realized - NO BUZZER. I started laughing to myself because I thought they are going to close the office and forget I am in here. I thought about shouting, "HELP" but I knew that would panic my doctor and nurse and they would think I was dying and come running. Then I began screaming, "CHRIS" - my nurse's name. About every 5 minutes, I would yell "CHRIS". I debated if I could pole vault off the table with all those needles but knew with my back/hip pain so bad today I would probably kill myself. I continued to shout for the nurse. Finally she peaked in and said, "I'd swear someone was calling my name but I think it was the office music that was playing." HAHAHAHA. I told her my story and that I had been yelling for her for 30 minutes. We all had a good laugh.

What Motivates Me

2010-10-25T20:04:00.000-04:00

A blog reader, whom I have never met, wrote:

I was thinking about how indominable you have been in the continuous battle your body has gone through for many many months now.I know that your faith has kept you strong, but I wish you would share with all of us what motivates you to keep going, where many others of faith would have decided to move on to the next level. If I were in your shoes, I don't think I would be as determined as you have been.

Yes, my love of God is my primary source of strength and ability to continue fighting this long, long battle. Never would an ounce of my flesh have been able to engage in this war against leukemia for over 14 years.

My love of family is another fundamental motivator. One day last month when most everything had gone horribly wrong from a medical perspective, I considered giving up and taking no further medical treatment. Quitting. Throwing in the towel. As I sat and pondered that option, I looked into the big brown eyes of my grandson who was sitting on my lap and I regrouped and put on my armor for another round of battles. How could I explain to him that his Grammy was a quitter? How could I look at our three daughters and tell them that life became too difficult for me - when I have raised them and taught them that "nothing is too difficult for God" to handle in our lives?

Obviously for me, moving onto my Heavenly Home is the easier of two paths that are before me - one path continues on this life journey that is fraught with pain and suffering. The other path leads to eternal life in Heaven that is overflowing with life, health, peace, and no suffering, pain, or sickness. Yet, for today, the people I love most reside on earth. And while I know that in Heaven, I will not shed a tear, I know that those I leave behind will hurt when I am gone. I have always put the needs of my family ahead of my own needs and wants, and I continue to do that with this life situation. If I was a selfish person, I believe I would discontinue all treatment sooner than later. However, since I have never been a selfish person, I continue to put what is best for my family over what is best for me.

Lastly, my love for life carries me through many difficult days. I have learned through these years with cancer to find the beauty in simple, everyday living. Azure blue skies, punctuated with the fluffiest white cotton clouds I have ever seen, caught my eyes just last week. The transitioning of seasons piques my interest more than ever before in my life. The golden-yellows of trees transitioning in the autumn chill beckons me outside to inhale the beauty of the Lord's Creation. And nothing like the winter's first snow of the season encourages me to focus not on the pain and suffering but to seek out the beauty and goodness of each day, of each moment.

An Update & Request for Prayer: October 25, 2010

2010-10-25T19:19:00.000-04:00

I received my first of four Prevnar 13 (pneumococcal) vaccines this morning. The logic behind vaccinating me with childhood vaccines is if my immune system can mount some kind of response to the vaccine, it will provide me with some level of protection against pneumococcal infections. (Next Monday I will receive the first of four doses of the HiB vaccine). Tonight, I feel unwell, am running a fever, my arm is warm and tender. Yet, to me, this indicates that my poor immune system is mounting some type of response! I guess I will get my bottle of milk, take some infant Tylenol, snuggle up with my baby blanket and nurse my vaccine side effects (just kidding).

We learned that my ANC (Absolute Neutrophil Count) was 500 today - not a good level of neutrophils since 500 and below is the most serious level of neutropenia, so Kevin just left for the pharmacy to pick up the $4500 box of Neupogen injections and my $5000 refill of Posaconazole for the month. The prescription plan loves me on this week when we refill these two expensive drugs (along with five others) and have over $10,000 in prescription charges.

My platelets had dropped back down to the 80,000 range (under 100,000 indicates Stage IV leukemia), so the steroids' effect appears to be short-lived on my counts.

All of us were with our daughter at the Heart Walk on Saturday. She came down with strep throat yesterday (the down side of being a nurse practitioner, caring for sick people everyday). My family doctor just contacted me and said my infectious disease doctor wants me started on another antibiotic to protect me from strep - normally, we go to the hospital and take this drug (no desensitization but I have to be near the hospital). I am too tired and feel too lousy tonight, so I am going to say a prayer and take the first dose at home. Say a prayer that I will not have another drug reaction.

Talk about the fright of my life today - I saw the oncologist prior to my vaccine for labs and to review my flow cytometry report. He sat, pondering the report. He asked me a couple of questions about the past flow results and I pulled out my 2008 flow report from my OSU oncologist. He told me that he was going to have to do some research to figure out my report.

So I asked him to review it myself. He handed it to me and left the room. In the interpretation section of the report, it stated, "Tranformation likely. More testing is indicated." My heart just sunk and I knew immediately that the splenic irradiation was now a mute issue and I knew I would die quickly because I could not survive the treatment for Richter's. Suddenly, I glanced back down at the report and realized, IT WAS NOT MY REPORT! It was L's report - someone had placed her cover sheet on my other pages. For a moment I whispered a prayer of thanksgiving to God but before I could utter all of the words of my prayer, my heart and thoughts returned to L. - yes, I had not received this life-changing news, but someone else was about to learn of her poor prognosis. So, please pray for L. - a woman I have never met, but whom is in need of our prayers.

I dropped off all of my records at the radiation oncologist's office when I left the cancer center. They laughed when they saw my 5" binder of records and I told them that those were the most pertinent records - the rest I had left in two four-drawer file cabinets! Keeping up with 14 years of medical records is no easy task.

Late today, we learned that the insurance has rejected again our request to cover the milk. This was quite disappointing. I will look into the appeal process, but to date, I have never won an appeal against them. So sad, given the positive results we have observed!

Brushing Up On Flu Facts

2010-10-24T20:55:00.000-04:00

All of my doctors recommend that everyone who spends time with me or in our home receive the flu vaccine. This is referred to as “herd immunity”. Immunize the “herd” (sorry family and friends for this reference to you as the “herd”) to protect me. The logic is if all of my family and friends stay healthy, I will have a higher potential to remain well. Again, this is going to have to be a very personal decision for each of my loved ones and some may choose not to vaccinate. I have read studies touting 5000 IU of daily Vitamin D3 as being a good defender of the flu. However, do not be offended, when I may not be able to be around crowds or groups of loved ones. The most frightening part of the flu to me is the fact that for 24 hours prior to ANY symptom, you will be contagious. A well-meaning family member or friend, feeling perfectly well, could visit me and infect me and note develop the first flu symptom until it is too late.

We are beginning to formulate a plan of protection for me. Many of these tips will help to protect each of you and those you most love from contracting this threatening virus:

1. Be aware of the flu outbreak levels in your state. Each Friday, I check the CDC’s flu map that shows the level of outbreaks in each state. Once these levels reach REGIONAL or WIDESPREAD, I retreat to staying at home. To check that website, visit: http://www.cdc.gov/flu .This is updated each week. Normally these REGIONAL and WIDESPREAD outbreaks occur in December and last through March – times I spend my days at home.

2. Learn to live like I do everyday. Purell your hands after you touch anything in public including others' hands, grocery carts, money, menus, salt and pepper shakers, buffet utensils, door knobs, elevator buttons. Use your shirt tail or jacket to push buttons, open doors, or when touching other “public” areas. It is much easier to PREVENT the flu rather than to TREAT it.

3. Wash your hands frequently. Cough and sneeze into your elbow – not into your hands where you will spread the germs.

4. Know the flu symptoms like the back of your hand. It is too risky to ignore a symptom as a “cold” or “allergies” or other excuses that you have used in the past. The key to surviving the flu virus is early recognition of the symptoms. Tamiflu, an antiviral medication, is again being recommended as the antiviral of choice for the 2010-2011 flu season. This is a prescription medication. There is a second antiviral with some effect against this year's flu strains – Relenza. If you require an antiviral, discuss your options with your physician. I cannot take Relenza because of having asthma and it is an inhaled drug.

5. The symptoms we cannot ignore according to the CDC are: fever, cough, sore throat, runny or stuffy nose, body aches, headache, chills and fatigue. Flu can be a deadly illness, especially for the elderly, children and immune compromised patients.

6. More important information about the flu is available at: http://www.cdc.gov/flu.

7. If you or your family is exposed to the flu it is vital that you tell me immediately and do not come around me. Be alert, vigilant and diligent to listen for word that anyone around you has been exposed to the flu or who has developed the virus.

8. If you develop any of the symptoms on the above list, STAY HOME. I am not the only immune compromised person in the community. Going to church, work, or other public spaces with these symptoms is unfair to those around you.

I am not a physician. Each person needs to formulate an anti-flu plan this year for his or her family. Discuss this information with your physicians. I do ask each of you who might come into contact with me, to take this threat very seriously and do all that you can to protect me. My body cannot defend me. Immunizations cannot defend me. I must rely upon God’s protection and the diligence of my family and friends to keep me protected and flu-free this year.

Four More Years

2010-10-24T20:25:00.002-04:00

On Friday, the 22nd of October, I officially completed my second full year of service as Lil Man’s Nanny. The day came and went without much ado; however, I was grateful to God for sustaining me for my important position.

Two years ago, this tiny squeaking and squalling baby boy was put into my car and we drove home for his first full day at Grammy’s home. I recall that nerve-wracking drive as though it was yesterday. I prayed a lot and we began our daily journey from his Mommy’s office to our home. During those two years, I have discussed the scenery along the way. We have talked about different billboards, animals we see, and farm equipment. Airplanes flying overhead were noted and we have counted about anything we have seen. After all, his Mommy and two aunties all were taught by me and they are intellectuals, so Lil Man will be a baby genius, too since he has Mommy and Grammy teaching him!

Two years have passed with our daily commute and now my backseat passenger doesn’t just jibber and babble, we converse! What a change – a remarkable, miraculous change! Almost everyday, he comes to my car door, gives me a hug then pops the button to open the trunk! I am no longer foolishly honking at horses and waving at airplanes by myself. Lil Man joins in and usually knows what our next mile ahead will reveal. He instantly notices when favorite billboards (such as Smoky the Bear) are replaced with political advertisements and is promptly peeved.

The harvest has made Lil Man’s drive through our rural highways even more worthy of conversation. He speculates if the combines will be in the field, the barn or just sitting outside. If the grain cart is in the field, he will tell you all about it. (His Dad is a farmer, can you tell?) When he notices fields that have not been picked yet late in the season, he exclaims, “Pick that corn.”

Four more years and this Lil Man will be ready for kindergarten. My nanny service contract will expire, if the Lord graciously blessed me with the forty-eight months I need to complete this tour of duty. I rejoice over these two years – hectic and tiring as they are for me – they have brought joy and sunshine and laughter into a heart and body that is often hurting.

Look at Jesus Only!

2010-10-24T19:55:00.001-04:00

One of my favorite inspirational books is The Hiding Place by Corrie Ten Boom. Her personal account of her family's arrest and imprisonment during Hitler's nightmarish reign always inspires me when I am struggling in my own life. Corrie and her family were Christians who aided and hid Jewish people in their secret room of their home. I am certain that Heaven richly rewards those who bless and help the Jewish people.

Most impressive to me is the forgiveness and love that Corrie and her sister Betsie ten Boom extended to the very people who were killing and harming those they most loved. In the darkest places on earth known as the Nazi Concentration Camps, where death and hatred enveloped the facilities, the ten Boom family members epitomized the forgiveness and love that our Savior asks that we offer to those who hurt us the most deeply in this life. Corrie wrote in The Hiding Place in reference to a Nazi, "He has been taught wrong. By watching us, seeing that we love the Bible and are truthful people, he will realize his error." Let us think of a person who has hurt us more deeply than anyone else on earth and then ask ourselves if we are looking at that person with the same type of understanding, love, forgiveness, and hope that the ten Booms felt for the Nazis. If not, time with the Lord is warranted.

In my life, learning to forgive my enemies and to love even the vilest of people has been a lesson that took years to master consistently. Still, I fail at times, when I am deeply hurt and my flesh lunges forward, desiring to return evil for evil. Yet, now I more quickly recognize when I have failed in my love and forgiveness walk and I seek His forgiveness and love so that I can better extend forgiveness and love to those people in my life who inflict hurt and heartache.

Sometimes, even people such as these sister saints of God, suffer greatly during this life. Yet just as it is my prayer to remain in His will and plan for my life, never to be distracted by disappointments and heartache, we must be focused and purposeful in living our lives. Otherwise, the enemy of our souls attempts to distract us and tug at our heart strings. Ten Boom prayed, “Lord Jesus, keep me in your will. Don’t let me go mad by poking about outside of it.” All too often I have known believers who are struck with life tragedies and who allow the grief of these events to push them from God’s will for their lives. Now that is a tragedy beyond death, illness, poverty, heartache, or other losses. When we remain solidified in the center of God’s will for our lives, we manage to sail through life storms with the peace that He intended for His children.

Betsie ten Boom suffered a life of physical suffering. Throughout her life story’s telling, I related intensely to Betsie. Fortunately, most people don’t suffer with physical ailments for years, yet for those of us who face chronic health challenges, key to our living productive, happy lives reflective of our Heavenly Father is the ability to eliminate hatred, doubt, unforgiveness, guilt, and anger at God. About Betsie, Corrie penned that her sister lived “in a prison of a crippled body”. Yet in that “prison of a crippled body”, she lived in the walls of the concentration camp and faithfully shared the Gospel with her fellow prisoners. The sisters prayed, not focused on their own desperate needs and situation, but for the needs of people around the world and their fellow captives. And they prayed for those very despicable people who held them captive and killed their family, acquaintances, and friends.

No matter, how desperately Satan wants to take life situations such as illness, imprisonment, or poverty to distract God’s children from our Father, he is inept. He is powerless when compared to the God of the Universe. And the ten Boom sisters continued to live lives that glorified God. They continued to minister in the midst of hellish conditions and situations. They never doubted the provision or protection of their Father. Circumstances never distracted them from the calling on their lives to reflect Christ to others. Corrie wrote: “Whatever in our life is hardest to bear, love can transform into beauty”.

Can we allow our physical experiences and what our physical eyes observe to be transformed and viewed as Jesus would see these experiences? At a desperate time in the concentration camps, Betsie told Corrie, “Don’t look at it, Corrie, look at Jesus only”. So many times in my life this tidbit of advice is exactly what I had to do – the ugliness of leukemia and hospitals and death predictions forced me to look up into the face of Jesus.

Look at Jesus only!

Friends

2010-10-23T21:48:00.000-04:00

Proverbs 12:26

"The righteous should choose his friends carefully, for the way of the wicked leads them astray."

God's Word is straight-forward in its choice of words that warns us about friendships. Most of us can name best friends - but are our best friends really the "best" friends for us? Do they build us up and encourage us in the Lord? Do they pray for us and encourage us daily? Do they represent God in their lives, their speech and their reputations? If Christ returned tomorrow and we were with our friends, would we be pleased to see our Savior's face?

Or, have we allowed friends to slip carelessly into our lives? People who daily, are pulling us away from God and His teachings? People who are bad influences, preach a theology that contradicts the Bible, and who possess habits and conduct that taint our own lives with their evil ways? Proverbs 12:26 instructs us to choose friends CAREFULLY. We must be cautious not to allow acquaintances who have bad habits, bad intentions, and bad reputations to enter into our lives and be granted the title "friend".

We are judged by those with whom we keep company. Others will form opinions of us based on our friendships. Yes, as believers who are strong in faith, we must be willing to go among the lost sinners in the world to proclaim the Gospel. However, those with whom we are spending the most time cannot, must not be enemies of the Lord and crowned as our friends. Satan will slyly use such "friendships" to destroy lives and reputations.

May we each perform a friendship inventory today and ask ourselves if each friendship that we are investing time and energy into is a friendship that will please our Heavenly Father. If it is not, it is time to gracefully separate ourselves from these situations and "choose new friends wisely". And as we step into a search for new God-fearing friends, who will build us up in the Lord, may we never, ever, forget to pray for those lost souls in need of a Savior.

As the lyrics of the Michael W. Smith's song Friends reminds us: "And friends are friends forever, if the Lord's the Lord of them", let us thank God for those forever friends who belong to Him and share their lives with us. Thanks, friends!

Heart Walk 2010: In Honor of Our Oldest Daughter

2010-10-23T19:38:00.000-04:00

Today, some of our family walked in the American Heart Association's Heart Walk, in support of our oldest daughter who was born with a congenital heart defect. Stephanie's shirt proudly declared: CONGENITAL HEART DEFECT SURVIVOR. And other family members had matching T-shirts with these messages: "I walk for my wife's heart." "I walk for my daughter's heart."

It was a beautiful autumn day that was enjoyed by all. No one thought I would be able to make the entire walk as sick as I have been. However, if you know me well, you know my determination and will power, so off I went from the starting line and although the finish line looked impossible at times, I made it!

I was humbled and a bit saddened today when a young mother released a balloon bouquet in memory of her baby daughter who died in July from a congenital heart defect. As the balloons soared Heavenward, I was reminded of how very blessed we have been to watch our daughter grow up with her own cardiac challenges. God has been so good and merciful to me.

Thank you to everyone who donated in our daughter's honor!

Headed to the Art Gallery

2010-10-22T18:42:00.002-04:00

This photograph, with one of my poems imprinted upon it, was selected for an upcoming art show at a local gallery. The works are creations of people who have utilized an art medium as a coping mechanism for their health challenges. I hope to have one of our daughters to stop by the gallery and "photograph my photograph" on exhibit.

The poem reads:

if

if i lay down and wallow in self-pity
then i have already died

if I dread days with breath remaining in my lungs
then I have already died

if i exist discouraged and down-hearted
then i have already died

if i dwell on death before my heart quits beating
then i have already died

if i focus on the what ifs and could have beens
then i have already died

if I live reflecting on the past and amid regrets,
then I have already died

if i finish my days with a heart filled with gratitude
then I am truly living

if i dread the disease yet treasure my time
then I am truly living

if i exist to bring praise and glory to Him,
then I am truly living

if i dwell on eternal life versus temporary death
then I am truly living

if I focus on family, friends and faith
then I am truly living

if I reflect on His blessings and not my challenges
then I am truly living

if my time arrives and death intercedes
then I truly will be living!

An Update & Request for Prayer: October 22, 2010

2010-10-22T18:36:00.000-04:00

I have had some remarkable improvements since adding the oil of oregano, olive leaf extract, goldenseal, garlic, and elderberry to my integrative protocol. The fevers have remained low this week and my cough is minimal. The oil of oregano is not pleasant to take orally. After additional research, I have decided to continue taking it orally and not by inhaling it.

Most impressive, I just returned from the doctor and we checked my T-Cells last week after I had been drinking the human milk for one month exactly. Amazing results again - my CD4 count was 201 before I began my second milk experiment (200 is the level used by HIV patients to determine when their diagnosis is changed to AIDS, so you can tell how much damage the leukemia and chemotherapy have done to my T-Cells. This is also the level at which PCP prophylaxis is often initiated and I was dreading that with the problems I have with drug reactions). In one month's time of drinking human milk from a milk bank, my CD4 count increased to 337 (normal range 370-1540)! My CD3 T-Cell count went from 314 to 441 (normal range is 710-2300)and my CD8 T-Cell count went from 62 to 109 (normal range is 183-1160).We are hopeful that this data will be enough evidence to convince the insurance to finally approve payment for the milk.

Also interesting, since beginning my new protocol of herbs and garlic, I have not required Neupogen injections! My ANC (Absolute Neutrophil Count that fights infection) was over 5000 this week - unheard of for me since my ANC always hovers around 1000 or less.

We decided to hold until worsening of symptoms or perhaps while undergoing radiation to begin the intensive drug rotation protocol that I mentioned in my last post. However, I will begin the monthly sinus endoscopes, monthly chest and sinus x-rays and monthly sputum sampling to be vigilent in recognizing infections and pathogens early when I have an improved chance of beating them back.

I was supposed to receive my first vaccine (Prevnar) on Monday but the insurance had not yet approved, so that has been postponed until this coming Monday. I did have my blood drawn to repeat my flow cytometry and cytogenetics to confirm there has not been any transformation of the CLL and I will learn those results on Monday.

I will meet with the radiation oncologist next week to discuss the feasibility of splenic irradiation. I know that I will be faced with another insurnace hassle on my hands and many details will need to be ironed out and arranged for this to happen. I anticipate requiring radiation fractions (sessions) on M-W-F for 4-8 weeks. If we can arrange for everything to fall into place by the first of November and I tolerate the entire 8 weeks, I will finish on Christmas Eve. Unfortunately, by the infections postponing the radiation from this summer, when I had hoped to have it done, this will mean sharing my birthday, Thanksgiving and Christmas with radiation as my companion. When the sadness in my heart from this consideration builds, I remind myself that in March of this year, I was told that I probably only have a year to live. If the experts with whom I have consulted believe this is my best attempt at knocking back the leukemia with the least impact on my damaged immune system, I feel I need to listen and be proactive.

As you would expect from me, I am investigating alternative treatments and supplements that are proven to improve the effectiveness of radiation therapy and that will diminish side effects. The side effects most often seen with radiation to any are of the abdomen will be nausea and fatigue. I need supernatural protection of my marrow and blood counts so that they will not be harmed by the radiation. Also, my doctor told me this week that the spleen being so enlarged from the leukemia has caused it to misplace most of my abdominal organs (kidney, stomach, intestine, liver). I am praying that if I do the radiation, that God will provide the proper angle for the beams so that my organs, especially my left kidney (which is right behind my spleen) will be supernaturally shielded.

One day this week when I had prayed alot about this radiation decision, I began reading my Bible. So often, God reveals Himself to me regarding certain requests or situations, through His Word. I was encouraged and comforted by these verses.

From Proverbs 16:

v. 1 "To man belong the plans of the heart, but from the Lord comes the reply of the tongue."

v. 3 "Commit to the Lord whatever you do, and your plans will succeed."

v. 9 "In his heart a man plans his course, but the Lord determines his steps."

I am asking, trusting and believing that my Father will hear my plans as I commit them to Him. What radiation is incapable to accomplish for me, with God's involvement, the results will succeed. I am asking Him to determine each step of this process - its timing, implementation, dosing, positioning, and the people He would have to care for me and to plan and perform the radiation treatments. Most importantly, I want this decision completely settled in my spirit before I speak the final words to proceed.

If We Ever Needed You

2010-10-22T18:09:00.000-04:00

If there are song lyrics right now that utter the cries of my heart, it is the song If We've Ever Needed You by Casting Crowns. On so many fronts, my soul is desperate to see God's hand move in my life and the lives of loved ones.

If I have ever needed you Lord, the time is now. I seek You and praise You through these words and ask that You will touch my outstretched hand, Father. Grant healing and restoration and peace and comfort to my family and me. May the troubles and trials of this world never shipwreck our faith. Enable me to be faithful until my last breath is exhaled from my lungs.

Hear our cry, Lord, we pray
Our faces down, our hands are raised
You called us out, we turned away
We've turned away

With shipwrecked faith the idols rise
We do what is right in our own eyes
Our children now will pay the price
We need Your light, Lord, shine Your light

If we've ever needed You
Lord, it's now, Lord, it's now
We are desperate for Your hand
We're reaching out, we're reaching out

All our hearts, all our strength
With all our minds, we're at Your feet
May Your kingdom come in our hearts and lives
Let Your church arise, let Your church arise

If we've ever needed You
Lord, it's now, Lord, it's now
We are desperate for Your hand
We're reaching out, we're reaching out
We're reaching out

If we've ever needed You
Lord, it's now, Lord, it's now
We are desperate for Your hand
We're reaching out, we're reaching out

If we've ever needed You
Lord, it's now, Lord, it's now
We are desperate for Your hand
We're reaching out, reaching out

We need You now
Revive us now
We need You now

To view the Casting Crowns' Video:

http://www.youtube.com/watch?v=u2biS7-Tuxw&feature=related

I John Favorite Scriptures

2010-10-18T20:03:00.000-04:00

1 John 1:6-10
"If we claim to have fellowship with Him yet walk in the darkness, we lie and do not live by the truth. But if we walk in the light, as He is in the light, we have fellowship with one another, and the blood of Jesus, His Son, purifies us from all sin. If we claim to be without sin, we deceive ourselves and the truth is not in us. If we confess our sins, He is faithful and just and will forgive us our sins and purify us from all unrighteousness. If we claim we have not sinned, we make Him out to be a liar and his word has no place in our lives."

1 John 2:2-6
"He is the atoning sacrifice for our sins, and not only for ours but also for the sins of the whole world. We know that we have come to know Him if we obey his commands. The man who says, "I know Him," but does not do what He commands is a liar, and the truth is not in him. But if anyone obeys His word, God's love is truly made complete in him. This is how we know we are in Him: Whoever claims to live in Him must walk as Jesus did."

1 John 2:15-17
"Do not love the world or anything in the world. If anyone loves the world, the love of the Father is not in him. For everything in the world—the cravings of sinful man, the lust of his eyes and the boasting of what he has and does—comes not from the Father but from the world. The world and its desires pass away, but the man who does the will of God lives forever."

1 John 2:28
"And now, dear children, continue in Him, so that when He appears we may be confident and unashamed before Him at his coming.:

1 John 3: 1
"How great is the love the Father has lavished on us, that we should be called children of God! And that is what we are! The reason the world does not know us is that it did not know Him."

1 John 3:4-6
"Everyone who sins breaks the law; in fact, sin is lawlessness. But you know that He appeared so that He might take away our sins. And in Him is no sin. No one who lives in Him keeps on sinning. No one who continues to sin has either seen Him or known Him."

1 John 3:7-9
"Dear children, do not let anyone lead you astray. He who does what is right is righteous, just as He is righteous. He who does what is sinful is of the devil, because the devil has been sinning from the beginning. The reason the Son of God appeared was to destroy the devil's work. No one who is born of God will continue to sin, because God's seed remains in him; he cannot go on sinning, because he has been born of God."

1 John 3: 17-18
"If anyone has material possessions and sees his brother in need but has no pity on him, how can the love of God be in him? Dear children, let us not love with words or tongue but with actions and in truth."

1 John 4:14-15
"And we have seen and testify that the Father has sent his Son to be the Savior of the world. If anyone acknowledges that Jesus is the Son of God, God lives in him and he in God."

1 John 5:5
"Who is it that overcomes the world? Only he who believes that Jesus is the Son of God."

1 John 5:11-12
"And this is the testimony: God has given us eternal life, and this life is in His Son. He who has the Son has life; he who does not have the Son of God does not have life."

1 John 5:18-19
"We know that anyone born of God does not continue to sin; the one who was born of God keeps him safe, and the evil one cannot harm him. We know that we are children of God, and that the whole world is under the control of the evil one."

An Update & Request for Prayer: October 16, 2010

2010-10-16T21:05:00.000-04:00

I realized it has been a few days since I updated the blog. The usual whirlwind of doctors’ appointments and tests has followed me this week. On Thursday, I had my pulmonary function tests and the results only verified my known asthma diagnosis but nothing else of particular concern. Then we traveled onto Indianapolis for my Infectious Disease (ID) appointment. My ID doctor has been very gracious to consult with my local doctors and provide his expert opinions.

Most of the appointment time was spent on him devising a complex rotation of drug schedule. He is attempting to prevent drug resistance and provide fungal, gram negative and gram positive coverage for me that varies each week. This would be a complicated undertaking if I did not have drug reactions and require drug desensitizations, however, with my drug challenges, this rotation will be timely, costly, and another “medical to do” to add to my ever-growing list. In addition to the drug rotation, he recommends monthly sinus endoscope, monthly chest x-ray, monthly sinus x-ray, gram stains, silver stains, bacterial and fungal cultures. I will continue receiving the IVIG treatments every 28 days and Neupogen injections as needed.

The drug recommendations are as follows:

Daily I will continue taking Acyclovir (antiviral) and Posaconazole (antifungal) as my preventative medications.

WEEK ONE:
1. Desensitize (IV) to Zyvox on Day 1 and then take 7 days of Zyvox (oral).
2. Desensitize (oral) to Cipro on Day 1 and then take 7 days of oral Cipro.
3. Take Amphotericin B intranasal washes twice daily.
4. Radiation on M-W-F if I decide to pursue that route.

WEEK TWO:
1. Take Amphotericin B intranasal washes twice daily.
2. Take Tobramycin Intranasal washes three times daily.
3. Sinus Endoscope – gram stains and cultures
4. Radiation on M-W-F if I decide to pursue that route.

WEEK THREE:
1. Desensitize (IV) to Tygacil on Day 1 and then receive 7 days of Tygacil daily IVs.
2. Take Amphotericin B intranasal washes twice daily.
3. Radiation on M-W-F if I decide to pursue that route.

WEEK FOUR:
1. Receive IVIG treatment on Day 1.
2. Take Amphotericin B Intranasal washes twice daily.
3. Take Tobramycin Intranasal washes three times daily (for a total of 10 syringes of medication daily inserted into the sinus cavities).
4. Radiation on M-W-F if I decide to pursue that route.
5. Monthly chest x-ray
6. Monthly sinus x-ray
7. Sputum gram stains and cultures

REPEAT IT EACH MONTH (with the exception of radiation which will be for 4-6 weeks).

The original plan was to begin this rotation on this coming Monday. I was pleasantly surprised at the ID office, my temperature was 96.8! My normal temperature is 97.4 and I had not achieved that in months. Thursday evening I noticed less coughing and Friday morning, my temperature was again 97.4 and I did not cough for my normal two hours upon awakening. A moment of epiphany! I began the oil of oregano on Wednesday evening while I was at my family doctor’s office. Hmmmmm…….was this off-the-beaten-path oil of oregano treatment attacking a pathogen that modern medicine had found elusive to eradicate? So, I called my family doctor on Friday morning and she agreed that we will hold for one week on initiating the four week drug rotation plan to see if the fevers continue to stay away and if the cough continues to improve. Obviously, if the fevers or cough worsen, we will begin the drug rotation sooner.

For those of you who embrace alternative therapies as I do, I am also taking goldenseal, garlic, elderberry, olive leaf extract, and tea tree oil – all with noted antifungal, antibacterial and antiviral properties. Just call me Herb! The other supplements I take are Vitamin B3 (to help with neutropenia); Vitamin D3 (15000 IU); fish oil; Scutteleria; Astragalus; a good multi-vitamin; DHEA; Alpha lipoic acid; garlic; Resveratrol; probiotics, HCL; Coenzyme Q10; and a rotation of Green Tea Extract and Curcumin.

My milk experiment continues. We rechecked my T-Cells last week but I have been on 4 weeks of IV steroids, so it will be a surprise if this check reveals that the milk has increased the T-Cells (since steroids reduce T-Cells). Also, on Monday, I will receive the first of my vaccines as suggested by the NIH team – we will begin with Prevnar – the pneumococcal vaccine given to babies. It will be the first of four immunizations to see my immune system will mount any kind of response (doubtful) to vaccinations that might help me fight off some of the more dangerous infections. Next week, I will receive the first of four HiB (Haemophilus) vaccinations. I know – I am reverting back to my infancy!

It is the overwhelming consensus of my very experienced medical consultants that span from my hometown to around the globe, that low dose splenic irradiation has the potential to knock back the leukemia to some degree and inflict the least amount of complications on me. Splenic radiation does have the risks of further damage to my marrow, secondary malignancies, reduction in my hemoglobin, platelets, T-Cells, and neutrophils. While most treatment of this leukemia will further worsen immune suppression, a couple of my doctors are speculating if we can reduce my tumor load (since most of my tumor load is in the spleen and bone marrow) then my rate of infections MIGHT lessen. I am praying – I don’t want to make this decision until God has made it crystal clear to me that I should pursue this path. If I feel so led, I will receive radiation treatments three times per week for 4-6 weeks.

Lastly a reminder for family and friends who live nearby. Flu and cold season is almost upon us. Right now several nasty viruses – gastrointestinal and cold-like/chest congestion – are rampant in our community. Please remember if you or a family member has been ill or exposed to someone who is ill, it is vital that I am not around you. My oncology nurses warned me last week to ramp up my awareness and to try to protect myself from viruses that I don’t need on top of bacterial and fungal infections. Flu shots are available – the recommendation is for all of my family and friends to have flu shots - but I will never insist upon that because it is a personal choice. Some reports have suggested a daily dose of Vitamin D3 can prevent the flu, so if you aren’t a flu shot embracer, Vitamin D3 might be a healthy, safe alternative for you. As flu season approaches, once again, I will be in isolation and not able to leave home. If it is a dangerous flu season, visitors to our home will probably have to don masks when visiting. Thank you for your understanding and for your help to protect me from contracting additional infections.

Please agree in prayer for me that I will be in perfect peace if/when I am to move forward to begin radiation and that something that I am taking will strengthen my battered down immune system.

Special Deliveries

2010-10-11T21:34:00.000-04:00

One night last week, after an especially challenging day, I crawled into bed. I glanced down at the floor, seeing something on the floor, illuminated by a dim light. I reached down and there were two pink cards with a Scripture on each of them. I have no earthly idea from where these cards originated. So, being the curious woman that I am, I turned on the bedside lamp and read the verses. I had this sense that these words were going to be important for me to absorb.

Card One:
“And we are confident that He hears us whenever we ask for anything that pleases Him. And since we know He hears us when we make our requests, we also know that He will us what we ask for.” I John 5: 15-15 (NLT)

Card Two:
"I tell you the truth, if you had faith even as small as a mustard seed, you could say to this mountain, ‘Move from here to there’ and it would move. Nothing would be impossible.”
Matthew 17:20 (NLT)

I believe the Holy Spirit – my Comforter and Companion – is always with me (Mark 28). I believe that the Holy Spirit is near to us and even prompts us as to what words we are to utter (Luke 12). In John 14, we are told that the Father sent the Helper, the Holy Spirit, to believers to teach us and “to bring to your remembrance all things that I said to you”. I do not believe in luck or chance. And when I saw these unidentified cards with verses imprinted on them, I knew deep within my spirit, that this was one way that my Father was “speaking” to me and was bringing these timely Scriptures to my remembrance. He realized that in the midst of the human suffering I had been enduring, that life emits from His Words and truly on that night, my spirit was uplifted and reignited by His Words.

I slept soundly that night and when I awoke, I read my morning electronic devotion on my phone. This was the verse for the next morning:

"For verily I say unto you, If ye have faith as a grain of mustard seed, ye shall say unto this mountain, Remove hence to yonder place; and it shall remove; and nothing shall be impossible unto you" (Matthew 17:20) NKJV.

The very same verse from one of the cards was awaiting my opening in my e-mail inbox. Same verse, different version of the Bible. Same message, different method of delivery. Same Father, nothing different about that! When a passage of Scripture is shot to my spirit from several angles – friends, through Bible study, through praise music, or through prayer, I pay attention. Everything medical science has to offer me has no outcome worth embracing. Yet, what my Father promises me is eternal life, peace on this journey, and hope for tomorrow – but I need to keep the faith and not allow circumstances to rob or water down my faith.

I believe that God is trying to firmly implant some aspect of His Word deeply into my soul. You know, we humans can be stubborn and a bit contrary at times and God knows that He must persevere in delivering these timely messages. Romans 8:25 tells us, “But if we hope for what we do not see, we eagerly wait for it with perseverance”. Job’s perseverance in the midst of deep human suffering inspires me. The Gospel writings remind me to look up to Him, in faith, and not to wallow in self-pity, doubt and suffering. I am “eagerly waiting” to see where my next life steps will take me.

An Update & Request for Prayer: October 11, 2010

2010-10-11T20:45:00.000-04:00

I received my monthly IVIG all day today. My cough and fevers were worse today - it is difficult to discern if the worsening is connected to the IVIG (fever possible; cough doubtful) or if the lack of IV's has caused infections to flare.

The pulmonologist is out of the office this week, so that appointment and probably the CT will be on hold. I will have both the pulmonary function tests and my appointment with my Infectious Disease doctor on Thursday. Wednesday, I will see my family doctor and have my large quarterly lab draw, where they draw about 15 tubes of blood. I always stand in amazement, knowing that my marrow is where blood components are produced and is infiltrated by over 95% cancerous leukemia cells. Only operating on 5% marrow, I know that God's touch must be upon that very tired marrow to produce blood to compensate for all of the blood that is removed from me.

A bit of comedy for the day - most of you know I resumed my milk experiment - drinking human milk in an effort to strengthen my immune system. To my surprise, the Clarian Milk Bank actually ships my milk in baby bottles. Now, the Infectious Disease Chief at the NIH has told me that at the NIH they are vaccinating their immune compromised CLL patients with the conjugated Prevnar pneumococcal vaccine and the conjugated HiB vaccine. The pharmacy is attempting to secure these vaccines for me - routinely given to infants and small children - and soon I will begin my two series of 4 immunizations each - in another off-label attempt to protect me. My Mom, one of my oncology nurses and I laughed this morning when Mom told the nurse, "We'll be in trouble since she has reverted back to drinking milk bottles and receiving her immunizations IF she forgets her potty training skills next!" As I have written many times, desperate people will try desperate things to save their lives!

On Monday, I will have some extensive testing done by the oncologist and if the immunizations have arrived, I will receive the first Prevnar vaccine and then wait for observation of reactions at his office.

I have added more garlic, olive leaf extract, elderberry, and goldenseal to my repertoire of supplements - all have antiviral, antibacterial and antifungal properties. My doctor was most concerned about the oil of oregano perhaps causing a reaction since I plan to inhale it into my lungs, so on Wednesday, she said we would "paint" some it on the inside of one of my nasal passages while I am at her office where I can be observed for a reaction. Herbs and natural therapies have always intrigued me and once again, I believe that these creations of God could hold value for me and my improvement.

My medical team seems convinced that the splenic irradiation remains my only treatment option that has the potential to be survivable. The prospect of transplant was approached again this week - both with an unrelated donor and with cord blood - and I remain firm in my decision that transplant is not the path I am to pursue. If I had this perfectly matched related or unrelated donor, it might have more appeal. I don't want to spend what life I have on earth, living hundreds or thousands of miles from home in a hospital, away from my family and friends. I don't relish the idea of dying somewhere away from home. I don't want to ask my family to wade through the transplant process with me - it is not for wimps. I want to die on my own terms, making my own decisions until the end.

I spent most of today researching more journal articles on this therapy. Flip a coin - do you want chemotherapy drugs cruising through your veins or do you want to zap rays of radiation into your body? Hmmmmm. I need to achieve some freedom from infection and at the same time, have reasonable platelet and hemoglobin counts before radiation can begin. This decision is complicated so I have asked the Holy Spirit to direct my feet to the path I should pursue. I need doors to close on this endeavor if it will cause more harm than good. I need His peace in my mind and heart before I proceed. I had hoped that the radiation treatments would occur in late summer to early autumn, before the onset of flu and cold season and winter. This long four month cycle of infections, IV's and hospital stays has delayed that plan and if I experience a break in infection, the radiation could be ongoing through the holidays. That is a bit sad for me to think about since I am the queen of holiday planning and preparations and all of my family holiday traditions MUST GO ON!

I asked the Infectious Disease doctor at the NIH not to sugar coat his advice to me and to tell me what he foresees my future time being like. He wrote: "It is possible you have had a particularly bad year regarding respiratory infections, but I think the natural history of your disease speaks against any meaningful long-lasting improvement in the absence of treatments to control it. I would expect any period completely free of infection to be short lived." It is at times like this and with factual information from the world's best medical minds, that I must simply trust God. There may not be a human solution for me. There may not be a break in the infections. Yet, I am trusting Him with my life and I am assured that I will take my last breath only when my Heavenly Father gives His divine nod for me to come Home.

Quotes for Reflection

2010-10-10T18:16:00.000-04:00

"I resolve to endeavor to my utmost to act and think

as if I had already seen the happiness of Heaven

and the torments of hell."

--Jonathan Edwards

"A firm faith in the universal providence

of God is the solution of all earthly troubles."

--BB Warfield

"The Church is a society of sinners - the only

society in the world in which membership is based upon

the single qualification that the candidate shall be

unworthy of membership."

--Charles C. Morrison

"When God is about to do something great,
He starts with a difficulty.
When He is about to do something truly magnificent,
He starts with an impossibility."
--Armin Gesswein

An Update & Request for Prayer: October 10, 2010

2010-10-10T17:58:00.000-04:00

We implemented our plan to take a break from the IV treatments this weekend. It was such a welcome relief after four straight weeks of IV's, seven days a week. My veins cheered! It is amazing what we accomplished by being home instead of the hospital all weekend. I probably over-did it, but it was enjoyable just to clean house and cook! This IV vacation was, in part, scheduled to see if the cough or fevers improved without the drugs. Micafungin's prescribing information lists cough and fevers as potential side effects. My fevers have been lower this weekend but the cough continues.

My NIH (National Institutes of Health, Bethesda, Maryland) doctor, Dr. M. connected my family doctor to Dr. B., who is the NIH Chief of Infectious Disease. I am blessed and forever grateful for doctors from around the world who have generously given their time, expertise and knowledge to benefit me. I have one of the best teams of doctors that anyone could ask for with this battle.

Dr. B shared extensively with my local doctor. This consultation has resulted in an emerging very hectic week. Please pray that I will have God-breathed strength to maintain this schedule. I am exhausted but I am certain we must remain vigilent and not retreat from battling this infection or it will take my life. Forward. March.

Monday - all day IVIG treatment
Tuesday - Hopefully a day at home
Wednesday - Appointment with family doctor. Acupunture. High resolution CT and pulmonary function tests (part of Dr. B's recommendations).
Thursday - Indianapolis to Infectious Disease Doctor
Friday - Pulmonologist. Possible Bronchoscopy and sinus endoscope beginning of next week to obtain cultures IF we can locate a lab that will guarantee timely, accurate Identification and Drug Sensitivities for all pathogens.

A summary of the insights of the NIH Infectious Disease Chief, I include here for other patients who might benefit.

The current mold identified from my lungs is Alternaria. Dr. B. writes: "it can definitely be a very bad infection". Often times, the local lab identifies organisms on cultures as "normal flora" and normal flora they may very well be for "normal" people. But as we have suspected, Dr. B confirmed that these "normal flora" may very well be pathogens (infection causing) for me. Thus, we need to locate a lab who will identify ALL pathogens and organisms - normal flora or not. Please pray specifically for the door to open to the lab I need.

He confirms that my current protocol of prophylactic medications including Posaconazole (antifungal), Acyclovir (antiviral) and Cipro (antibiotic) is appropriate for me. He shares that it is inevitable that I will become resistant to drugs since I take so many and so often. However, Dr. B. believes "on the average we believe prophylaxis is superior than no prophylaxis".

You might recall that we are always concerned about the risks of PCP (a dangerous type of pneumonia contracted by people with low CD 4 counts like mine). He supported our decision to hold on taking PCP prophylactic drugs at this time. They are challenging drugs for people without drug allergies like myself, so we have been cautiously hesitant to initiate PCP prophylaxis.

I inquired about restoration of my CD 4 T-cells and immune system. It appears that only transplant has the potential to restore T-Cell and immune function, if one can survive the transplant.

I specifically asked about the effect low dose splenic irradiation will have on my damaged immune function, if I pursue radiation in the future. I was pleasantly surprised to learn from Dr. B. that he feels that the low dose splenic irradiation will only slightly worsen my immune function. He suggested that I transition from Cipro to an antibiotic with better anti-pneumococcal activity if I begin radiation.

Thank you for your continued prayers.

Turn Back

2010-10-08T22:15:00.001-04:00

Life in this world is tough and full of heartbreaks. This holds true for non-Christians and Christians alike. We are not promised a life free of struggle when we commit our lives to Christ. 1 Peter tells us: "In this you greatly rejoice, though now for a little while, if need be, you have been grieved by various trials, that the genuineness of your faith, being much more precious than gold that perishes, though it is tested by fire, may be found to praise, honor, and glory at the revelation of Jesus Christ, whom having not seen you love. Though now you do not see Him, yet believing, you rejoice with joy inexpressible and full of glory, receiving the end of your faith—the salvation of your souls.”

This week I listened to the testimony of a young woman named Heather Williams. If we think our lives are difficult, try to imagine what she has endured – homeless at age eleven, abuse by a step father, hunger, impoverished and as a young Christian she lost her first baby boy to a heart condition. Take a moment to listen: http://www.youtube.com/watch?v=2g7AytNuJ7Q

Yet through her heartache and heartbreak, she discovered the One who could restore what life had ripped and robbed from her – the Lord Jesus Christ. She did not allow Satan the opportunity to rip her from her Savior’s arms. She did not permit anger and bitterness and heartache and disappointment to separate her from her Father’s love (Romans 8:39: “….nor height nor depth, nor any other created thing, shall be able to separate us from the love of God which is in Christ Jesus our Lord”). She did not turn her back on the One and Only who could make her life complete, satisfy her soul, and promise her life eternal.

Instead, she has recorded this song of praise and tribute to Our Lord, “Hallelujah”. Take a moment to listen: http://www.youtube.com/watch?v=OX2uM0L3Y1A&feature=related

When I listen to this song, I can hear the strength in her voice that could only emit from a life shattered by tragedies and heartaches and that has been repaired and restored by God. I know God challenged me to consider that in the midst of my suffering that I must march onward in my love, service and dedication to Him. Praises can never be far from my breaking heart.

Sufferings and disappointments do not come from the gentle hands of our Father. They are delivered from the enemy of our souls – Satan. 1 Peter 1:5-8 states: “Be sober, be vigilant; because your adversary the devil walks about like a roaring lion, seeking whom he may devour.” We must never become angry and turn our backs on God when we travel through life’s valleys. He is just as near to us during those times as He is when we are rejoicing on the mountaintops. How selfish and two-faced it would be of us to only honor, obey and love God when life is “good” (from our mortal perspectives). God’s perspective on our earthly existence is, I am certain, much different than our earthly perspectives.

This week I read this from the Simpson Devotional. Its message is little different than the message of this blog:

Some day even you, trembling faltering one, shall stand upon those heights that Joshua knew. As you look back upon all you have passed through, all you have narrowly escaped, all the perils through which He guided you, the stumblings through which He guarded you and the sins from which He saved you; you will shout, with a meaning you cannot understand now, Salvation to our God, which sitteth upon the throne, and unto the Lamb (Revelation 7:10). Some day He will sit down with us in that glorious home, and we shall have all the ages in which to understand the story of our lives. He will read over again this marked old Bible with us, He will show us how He kept all these promises, He will explain to us the mysteries that we could not understand, He will recall all the finished story. Then I am sure we will cry: "Blessed Christ! you have been so true, you have been so good! Was there ever love like this " And then the great chorus will be repeated once more - There failed not ought of any good thing which the Lord had spoken; . . . all came to pass.

God’s sovereignty and love never fail, even when life fails us. God’s gifts of forgiveness and grace are never far from us, even when we deviate from the divine plan and purpose for our lives. He is always standing, waiting for the lost soul to return to Him. His eyes stream with tears. His heart breaks into a million pieces as we neglect and reject Him. And His mind recalls the death his Son died for each precious piece of humanity as we run from Him in sin, rebellion and disobedience. He knows the end of each our stories. He waits. Will you surrender all to him this very day? After all, He is the “Author and Finisher of our faith" (Hebrews 12:2)! Hallelujah!

Prodigy

2010-10-07T21:28:00.002-04:00

A musical prodigy I am not. I cannot sing without piercing the eardrums of listeners. Only Lil Man will tolerate my renditions of "Jesus Loves Me", "Gray Squirrel" and other children's classic songs. I failed at the clarinet and piano and reading music just baffles me. I was not born with a musical gene.

Alas, I have another opportunity to prove that I can master an instrument. Today my doctor prescribed a lung flute for me. A lung flute? I can imagine the visions dancing in your minds! Yes, there is such a musical, no, I mean medical device, that we believe has the potential to benefit me. It does not require musical giftedness, so I should succeed.

Above is a photo of the lung flute taken from www.medicalacoustics.com/LungFlute where I purchased it. Perhaps you would like to join my band?

An Update & Request for Prayer: October 7, 2010

2010-10-07T20:12:00.001-04:00

My PICC site infection looked better yesterday and today and my blood cultures are still negative. Thank the Lord! I am still running fevers. The lab promised HAHAHAHAHA that we will have the fungal drug sensitivities by Friday that they failed to order a month ago when I really needed them. Well, surprise, surprise, the lab has failed me again. Today they failed to provide us with vital fungal drug sensitivities that we have been awaiting to make treatment decisions

I am too exhausted and sick to fight this negligence right now, but I have decided if I have to drive 3 hours round trip to IU's labs to deliver all future culture samples, that is what I am going to do. My doctor and I have fought too hard to keep me alive to let this lab's negligence kill me.

For my local blog readers, I would be amiss if I did not tell you that MEDLAB is the laboratory that continues to make errors on me. Just last month when I went to their lab for blood cultures to be drawn (a very critical test that demands sterile technique to be used for the blood draw), the lab tech first tried to prep the site with only alcohol. I demanded betadyne or chloraprep (they did not have). I provided my own betadyne, The tech cleaned the area and then BENT OVER AND BLEW ON THE CLEAN AREA. I was appalled. I told her that she just blew her germs all over my sterile site for the blood draw. I made her reclean the area before drawing the cultures. This is an example of the errors and ignorance that is displayed continually by these people. If you are concerned about you and your family's lab results being accurate, you need to investigate the labs you are utilizing. Another tech repeatedly refused to listen to me when I told her that with my blood cultures I require two sets of cultures drawn from two sites. She drew one set from one site. And once I left, I was called and told to return to the lab because of a "problem" (what a surprise!) The problem being that I was correct and the uninformed tech refused to listed to an informed patient. If I listed all of the lab errors just from June, you would shake your head in dismay. Can you sense my frustration?

One positive outcome of these 4 weeks of IV treatments is that I have received daily IV steroids as premedications due to the recent drug reaction. Guess who now has platelets of 180,000 [50000 before steroids] and hemoglobin of 12.9 [9 before steroids] which has given me a reprieve from Stage 4 to Stage 2! My CLL has always responded to steroids, one of the earliest CLL treatments used. Too bad steroids are used with such risks and their benefits are normally short-lived. For today, I will celebrate "only" being a Stage 2 leukemia patient!

In collaboration with my doctor, we have decided to take a break over the weekend from the IVs. I am exhausted beyond description and I really need rest. More importantly, we need to observe and determine if my fevers and coughs worsen or improve without the IVs. If they worsen, more treatments will be indicated. If they improve, there is a slight chance that one of the drugs is causing the cough and fevers (side effects).

I asked (thankfully) that my IgG level be rechecked today (since I was given the wrong brand in September and had to stop it and I only received half a dose). The IgG was quite low, so I only thought I wouldn't be at the cancer center on Monday - back I will go for IVIG all day on Monday. Keep donating blood - this is the treatment that takes the immunoglobulins from 3000-5000 blood donors to make my one treatment - no wonder it costs nearly $10,000 every 28 days.

I am thankful to see "all things working together for good" in this situation. Today my doctor told me that it is a miracle that I have survived all of these infections since June. I told her the Good Lord Above is responsible for that miracle. All thanks be to Him (especially for His protection and care through so many errors of man). God is still on His throne!

An Update & Request for Prayer: October 5, 2010

2010-10-05T19:22:00.001-04:00

It has been another two challenging days since my update on Sunday. I received my IV's yesterday yet continue to have breathing difficulties, coughing, and fevers. My labs yesterday were concerning. My potassium was elevated as was my creatinine (indication that my kidneys are struggling to flush these toxic medicines). Most concerning, my White Blood Count had jumped by 30,000, from around 70,000 to 100,000 (normal is 5,000-10,000). I showed 28 percent atypical lymphocytes. The local oncologist wants to perform flow cytometry and some other testing to rule out a transformation to another, more aggressive leukemia. I feel confident that is not occuring. Fortunately, these tests can now be run on peripheral blood (from veins) versus from bone marrow as it was done in my earlier years with leukemia. He wants to wait until I have completed the IV's for ten days before we perform these tests.

I noticed the area around my PICC (Peripherally Inserted Central Catheter) line was reddening yesterday and was draining a bit. My arm hurt more and more overnight, so I called my family doctor this morning. She agreed to take a look at it for me early this morning. As soon as she examined it, she said the PICC line must be removed. My heart sank. Not only because of the risks that a PICC line infection poses for me (infection in blood stream) but also because I know that vein access is failing. She and her nurse removed the PICC line and I had to stay for a while to get the bleeding to stop. Then she wanted to culture the tip of the PICC line and order blood cultures - all of this required another 5 failed venous access attempts. I desperately need to improve because I do not know what we will do without the PICC line. I should know more tomorrow about the infection. It is surreal that I can be taking so many antibiotics and still develop these infections.

I left home at 8:30 AM and returned at 10:30 AM from the PICC removal and labs then left again at noon and didn't return until 5:30 from my IV's. Just maintaining this schedule would be exhausting for a healthy body!

My cough and fevers continued today. Friday will conclude four entire weeks of IV treatments with two different drugs. I desperately need to sense improvement. Thank you for your prayers.

Autumn is in the Air

2010-10-03T19:26:00.000-04:00

An Update & Request for Prayer: October 3, 2010

2010-10-03T19:16:00.001-04:00

Well, as the lives of cancer patients often go, yesterday the Leukemia Roller Coaster came racing back down the hill again. I spent all day at the hospital as an unbelievable comedy of errors played out in front of me. Central to the errors was another medication error ...... if you learn nothing else from my battles, learn that you better be on your toes when you are receiving medical care.

They delivered oxygen to me late yesterday after we returned home. My 02 levels are down again and my fevers are back up. I am baffled. The oxygen was a welcome relief overnight although always a bit heart-breaking to see it delivered to our house at age 46. I did sleep much better with oxygen.

I returned today to the Ward of Errors for my IV's and everything went quite smoothly. Thank you for praying for a better day of medical care for me. The cough, bloody sinus drainage, temperatures, and fatigue continue.

This evening I received an e-mail from my beloved NIH (National Institutes of Health, Bethesda, Maryland) retired oncologist. He has contacted the Chief of Infectious Disease at the NIH and this gracious doctor is willing to consult with my local doctors regarding these complicated, unending infections. Please pray for him to be blessed with a divine understanding of my care and that he will recommend something that might benefit me. Thank you, Dr. M. for arranging this consultation!

Tomorrow, I return to the cancer center for the 24th straight day of IV's (not counting inpatient IV's). It is time to experience a break-through. Keep praying!

Finally - Improvements!

2010-10-01T18:06:00.001-04:00

Are you ready for a good report for a change? :-)

Overnight, I realized for the first time in weeks and months that I was not coughing and wheezing so violently. I got up and checked my temperature and it was in my normal 97 range - FINALLY! And my oxygen level was back to 98%! When I woke up this morning, I was praying that all of this had not been a dream.

My friend Shelly picked me up and took me to the cancer center for my two IV's today. When I walked in and the nurses saw me, they said, "STACIE'S BETTER!" I think I have had them all scared.

I am back home and worn out from the IV's and having my usual stomach upset in the evenings from the medications but I am so grateful to see these tiny breakthroughs. Keep praying - God might not be ready to take me Home yet!

I return to the hospital on Saturday and Sunday for the IV's Tomorrow they will recheck labs to see how my kidney function is holding. One of these two IV's is the one that can damage hearing and kidneys. So I will appreciate targeted prayers for God to protect my hearing and kidneys.

Another friend, Laurie, came by today with a box of tea tree oil teabags for me - she said it works well as an antibacterial and antifungal. I'll give anything a try! I am going to pick up the oil of oregano tomorrow. Another friend emailed me (she owns a GNC store in Tennessee) and told me that her customers have had excellent results with fungal infections and oil of oregano. I might hold on the colloidal silver because it can interfere with thyroid medicine (which I take) and the class of antibiotics that include Cipro (and I live on Cipro).

That's all folks!

Photo: My friend Shelly.

An Update & Request for Prayer: September 30, 2010

2010-09-30T19:38:00.000-04:00

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.

I Need A "Miracle"

2010-09-29T19:05:00.000-04:00

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.

My Battle Cry

2010-09-28T22:55:00.003-04:00

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.

"Jesus Calling" by 33 Miles

2010-09-28T22:08:00.000-04:00

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

Update & Request for Prayer: September 28, 2010

2010-09-28T20:35:00.000-04:00

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.

An Update & Request for Prayer: September 27, 2010

2010-09-27T19:59:00.000-04:00

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.

An Update & Request for Prayer: September 26, 2010

2010-09-26T16:09:00.000-04:00

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.

A Part of God's Plan

2010-09-24T21:52:00.000-04:00

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!

Persevere: Hebrews 10:35-36

2010-09-24T21:24:00.000-04:00

"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."

Do Things Usually Grow Worse Before They Improve?

2010-09-24T21:06:00.000-04:00

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.

My Home Away from Home

2010-09-23T20:18:00.000-04:00

Granted, I should not post a picture on my blog that is this unflattering. But hey, if you had traveled over 200 miles in one day, had a PICC line inserted and was on the last of two IV's, you might not look much better than I did in this photo taken yesterday!

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?

2010-09-23T20:06:00.001-04:00

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.

An Update & Request for Prayer: September 23, 2010

2010-09-23T19:30:00.000-04:00

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.

Urgent Update & Request for Prayer: September 21, 2010

2010-09-22T01:37:00.002-04:00

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 ........

The Kind of Life He Lived

2010-09-20T12:10:00.002-04:00

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."

Spiritual Challenges

2010-09-20T10:50:00.004-04:00

"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.

No Match for God

2010-09-20T10:09:00.002-04:00

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.

Update & Request for Prayer: September 19, 2010

2010-09-19T18:20:00.002-04:00

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.

An Update & Request for Prayer: September 16, 2010

2010-09-16T19:26:00.002-04:00

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 ......

Exhausted: A BRIEF update

2010-09-15T21:36:00.002-04:00

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.