Sunday, October 31, 2010

Fall Foliage

You Were Working for Me

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



Friday, October 29, 2010

Autumn colors

Marriage: For Better, For Worse

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

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!

Thursday, October 28, 2010

Splenic Irradiation Update: October 28, 2010

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.

Wednesday, October 27, 2010

Global Repentance

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

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

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.

Monday, October 25, 2010

What Motivates Me

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

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!

Sunday, October 24, 2010

Brushing Up On Flu Facts

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

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!

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!

Saturday, October 23, 2010

Friends

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


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!

Friday, October 22, 2010

Headed to the Art Gallery

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

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

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

Monday, October 18, 2010

I John Favorite Scriptures

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."

Saturday, October 16, 2010

An Update & Request for Prayer: October 16, 2010

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.

Monday, October 11, 2010

Special Deliveries

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

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.

Sunday, October 10, 2010

Quotes for Reflection

"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

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.

Friday, October 8, 2010

Turn Back

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!

Thursday, October 7, 2010

Prodigy

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

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!

Tuesday, October 5, 2010

An Update & Request for Prayer: October 5, 2010

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.

Sunday, October 3, 2010

Autumn is in the Air



An Update & Request for Prayer: October 3, 2010

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!