Wednesday, March 31, 2010

Those March Days Conclude

"It was one of those March days
when the sun shines hot
and the wind blows cold;
when it is summer in the light
and winter in the shade."

-Charles Dickens

A Praise for March 31, 2010

Well, do I ever have some impressive electroacupuncture results to report! I had my fourth session yesterday and we drew blood prior to the electroacupuncture, as we have been doing weekly.

My counts from the week prior to the first treatment and each week thereafter are posted below ...... look at this improvement with someone who has very worn out bone marrow:

My hemoglobin has gone from 9.6 to 10 to 10.3 to 11.4 (Normal range 12-16). Can you believe this improvement in 4 weeks and this is despite a tremendous loss of blood that I have had the past week. Even my doctor said yesterday it would be a miracle if my hemoglobin had even managed to remain stable this week due to the blood loss.

My platelets have gone from 82 to 85 to 99 to 131! I actually am now in the NORMAL PLATELET RANGE (130,000 to 400,000) per our lab's value ranges.

These improvements move me from Stage 4 leukemia to Stage 2 leukemia without the slightest trace of chemotherapy entering my veins.

I have some other concerns going on that I will post later, however, I just wanted to share this amazing report with all of you.

Thank You, Lord, for guiding me to this study! I appreciate all of your prayers.

Sunday, March 28, 2010

An Update & Request for Prayer: March 28, 2009

I am seeing some early, encouraging improvements with the electroacupuncture protocol (see earlier post). The steady decline in my hemoglobin and platelet counts has stopped - I would like to see much more improvement, but am very grateful for any improvement! Thank you for your prayers.

I have received three treatments of electroacupuncture total - the following lab results are from before the treatment began, after one treatment, and after two treatments.

My hemoglobin has increased from 9.6 to 10 to 10.3 (Normal 12-16).

My platelets have increased from 82,000 to 85,000 to 99,000 (Normal 130,000-400,000).

All things are possible for those who believe!

I have been studying the book The Whole Body Workbook for Cancer by Dan Kenner, PhD. I have made the decision to decline any further chemotherapy treatment at this time. Most of my doctors believe that my life is threatened equally by the decline of my immune function (and subsequent, serious infections) and the leukemia.

I know with certainty, that every remaining chemotherapy option that I have will further damage my already fractured immune system. So my current plan is to follow this new protocol with the intense focus of improving my immune function. If that is achievable, then chemotherapy could be reconsidered. If I cannot improve my immune function, it will be suicidal to consider more chemotherapy.

This new protocol focuses on detoxing the body. My doctor is ordering an extensive testing panel that will be drawn on Tuesday and sent to North Carolina. This should give us some valuable information on the function of my liver and what/if any toxins are accumulating in my body. Strict dietary rules and the addition of additional supplements are also included. Time for acupuncture, Chinese massage (I will resume in April), prayer, and exercise are also vital components of this protocol.

It is very difficult to make a decision that contradicts the recommendations of my physicians. I know their recommendations are based on the protocols that they are trained to prescribe. Yet, I sense that I have made the right decision for myself, for today.

I continue to fight chest congestion and a sample was taken last week - so we are waiting to see if it returns as positive for fungal growth in my lungs (never a good finding). That could result in IV antifungals again.

Thursday, March 25, 2010

A Prayer for Today: March 25, 2010

Heavenly Father,

Thank You, Father for being our Savior. Where would we be without You and the promise of eternal life? Life here on earth would be so desperate without that Eternal Hope. Thank You for sacrificing Your Son Jesus on the cross for our sins. May we never take that sacrifice lightly. Let us, during this Lenten season, reflect on Your Sacrifice and the precious, priceless gift of salvation that Jesus died for on our behalf.

If someone has not yet confessed his or her sins and asked for Your forgiveness and promise of eternal life, I pray today will be that day. Then and only then, will the heartache and sin of yesterday be replaced with the hope and forgiveness of today. For each of us who have made this commitment to serve You and to seek Your forgiveness for our sins and failures, forgive us if we have become nonchalant about this Great Gift, Lord.

Be especially near to those families who have lost a loved one and who are still grieving. Comfort them, Father. Replace their hopelessness with optimism. Impart divine wisdom to each doctor and researcher studying this disease. For many of us, we need a medical breakthrough. You are able. For those struggling with family decisions and difficulties, guide them and encourage them. Allow treatment to be given to fellow leukemia fighters with the fewest side effects possible. Allow our lives to reflect You in whatever we say, whatever we do, and wherever we go, Lord.

You are our Everything. In Jesus’ Name I pray. AMEN.

Friday, March 19, 2010

Fifteen More Years!

Today I spent a long day in the chemo chair. My monthly IVIG treatment concluded this rather hectic week. Another 3000 people's immunoglobulins, harvested from their blood donations, merged into my veins and will go work to strengthen my immune system. Thank you to those of you who donate blood, including our daughter this week.

Yesterday, I had my second electroacupuncture treatment (see earlier post for more details). The amount of current that was used was increased and it was an interesting thirty minutes in the "electric chair". What I found very encouraging and intriguing was after the treatment that I had twinges in my spleen (where there is much leukemia) and later last night I developed the deep bone pain in my hip bones that I have with Neupogen. Neupogen causes this pain as it stimulates my bone marrow to produce neutrophils, so I believe the electroacupuncture was stimulating my marrow to produce the much needed platelets and red cells!

As I sat in my drug-induced confusion and grogginess today, I decided to try to research and locate the physician who authored the paper on electroacupuncture improving the myelosuppression in a leukemia patient. I found that he is a professor at Yale. So I wrote Yale with my questions for this physician and asked that they forward to him. In the hours at the cancer center today, he received my e-letter, responded and has offered to speak with my physician as she needs additional information for this unique protocol we are experimenting with for the next 6 weeks.

I have reached my "final answer" on the OSU recommendation to begin treatment with Revlimid. No. No. No. Such a simple word to express such an agonizing decision. Although, this second time of considering Revlimid did not take nearly as much time or thought to arrive at the answer. Last April and May when I debated this new, risky treatment, I felt that God truly guided me away from it. And this year, one Scripture returned to me over and over as I pondered its use: "For I am the Lord, I do not change" (Malachi 3:6). If I was truly convinced last year that the Lord did not want me to pursue that path, I don't believe He would change on that guidance to me.

To further confirm this to me, today at my local oncologist's office, his head nurse told me that they "had" treated their first CLL patient with Revlimid. "Had" meaning that he did not survive. It was so eye opening to me - I know the potential side effects of Revlimid backward and forward. But to hear about a local man taking the first dose, going into kidney failure and requiring dialysis, only to recover and take a second dose that resulted in an anaphylactic drug reaction and his intubation, infection with pneumonia and death, was brutally near to my heart and soul. These drugs, although some hold the "promise" of extending life (I am still convinced that God is the only one capable of this - consider Hezekiah), they also hold the threat of imminent death when they are taken.

Within an hour of hearing this account from my nurse, I received an e-mail from one of my most trusted NIH physicians. I had told him that my family doctor and I had definite reservations about my taking Revlimid and he responded that "he agreed with us". The Good Lord just wanted to be certain that I was confident in my decision and in Him!

I return over and over to the Hezekiah account. 2 Kings 20 details his plight:

1 In those days Hezekiah was sick and near death. And Isaiah the prophet, the son of Amoz, went to him and said to him, “Thus says the LORD: ‘Set your house in order, for you shall die, and not live.’”2 Then he turned his face toward the wall, and prayed to the LORD, saying, 3 “Remember now, O LORD, I pray, how I have walked before You in truth and with a loyal heart, and have done what was good in Your sight.” And Hezekiah wept bitterly. 4 And it happened, before Isaiah had gone out into the middle court, that the word of the LORD came to him, saying, 5 “Return and tell Hezekiah the leader of My people, ‘Thus says the LORD, the God of David your father: “I have heard your prayer, I have seen your tears; surely I will heal you. On the third day you shall go up to the house of the LORD. 6 And I will add to your days fifteen years. I will deliver you and this city from the hand of the king of Assyria; and I will defend this city for My own sake, and for the sake of My servant David.”’” 7 Then Isaiah said, “Take a lump of figs.” So they took and laid it on the boil, and he recovered. 8 And Hezekiah said to Isaiah, “What is the sign that the LORD will heal me, and that I shall go up to the house of the LORD the third day?” 9 Then Isaiah said, “This is the sign to you from the LORD, that the LORD will do the thing which He has spoken: shall the shadow go forward ten degrees or go backward ten degrees?” 10 And Hezekiah answered, “It is an easy thing for the shadow to go down ten degrees; no, but let the shadow go backward ten degrees.” 11 So Isaiah the prophet cried out to the LORD, and He brought the shadow ten degrees backward, by which it had gone down on the sundial of Ahaz.

What can we learn from this? Hezekiah had been given his death order - just as I was given on Monday. Get your affairs in order - we're talking months now and not even years. It does not take many sunrises for a month to dissipate like a vapor. No other information on Hezekiah is given to us after we learn of his prediction of imminent death before we read precisely what Hezekiah did - he turned to the Lord, prayed, reflected on his own service to the Father, and he wept. After all, Hezekiah was flesh and blood just like me. Perhaps rapid-fire visions of his children or grandchildren or family raced through his mind and the tears arrived. Although I know a glorious Heavenly Mansion awaits me, I would like some more time on earth to share with those I most love.

Hezekiah was reassured that the Lord had "heard his prayers and seen his tears". This verse has always been intimately dear to me. Of all of the humanity on the face of this earth, God hears MY prayers and sees MY tears. He is a personal God, concerned about each of His creations. When no one else knows the prayers of my hearts or sees the tears that come in the middle of the night, God sees and understands. He comforts. He continues to grant me with more life, just as he promised healing and fifteen more years to Hezekiah. How many times have I uttered, "Fifteen more years, Lord. Fifteen more years"!

I am certain that the reason that I have survived this long is that I seek God's guidance and that He hears those prayers and guides me through His Holy Spirit. There will be a day that will be my last. (Sorry to burst your bubbles, but all of my readers will have that last day too!) But I am assured that when He finally calls me home, it will at the exact time He determined for me. I don't want to make missteps and commit to a drug that could rob me of life. Decision making is crucial to our lives. When we try to fly solo and make decisions on what WE think is best or what SOMEONE else thinks is right, without consulting our Maker, we will be in serious, serious trouble. He speaks to us through his Holy Word. If we never open a Bible, how can we begin to surmise that we know the path we should pursue with our lives? It is impossible to remain on track without following His instruction.

So that is what I am doing - praying, seeking guidance and reassurance from His Word, listening to Godly counsel from others, and trusting. I know that when I make the decision to either seek out another treatment or just accept my life as it is and believe that God will relocate me at just the precise moment, that it will be the decision that is in my best interest. That kind of confidence can only come from the Lord.

This has been a gut wrenching week filled with bad reports and predictions. This week, I took the time to reread something that our daughter wrote to me last year when I was told that I was "end stage leukemia": "Maybe you just needed all of these reports on record so that when your miracle comes along you'll have proof for everyone of what a miracle it actually is!" Amen.

Note: Although I arrived at the decision not to treat with Revlimid, it is a drug that has helped many people and will continue to help many people. All cancer drugs pose risks and threats to us and I do not want this post on Revlimid to frighten others who might want to try it.

A Prayer for Today: March 19, 2009

Father God,

We delight in You, Lord. You are that One steady hand in all of our life storms. You are ever-present and always loving. Help each of us to be the same - ever-present in Your presence, not distracted or too busy to sit at Your feet and praise You. Help us to be ever-present to help the hurting people we encounter. Never let our own problems override our abilities to help those in our lives. May we be always loving. Our own pain, disappointments, and challenges are not excuses for us to stop loving. Proverbs 8:17 instructs us: “I love those who love me and those who seek me diligently will find me.”

Forgive us, Father, if our seeking has not been sincere or if we have become negligent about seeking you. We are truly sorry, Lord, when we try to take our lives into our own hands and fail to diligently seek You. Holy Spirit, be our daily prompter. Prompt our hearts to love more and our time to be more wisely spent seeking You and Your Will for our lives.

We rejoice at the victories so many have shared. We marvel at the answered prayers we have seen You supply. Yet, others remain burdened and bowed down with treatment challenges and decisions. Some are battling life threatening infections. Others need financial provision during these difficult economic times. Supply each physical need, Lord, but more importantly, I beseech You to perform the spiritual changes in lives that are needed – for the spiritual concerns are far more important than any physical request we might have. May our lives be used to reflect You to those who do not know You as their Lord and Savior.

To God be the glory.In Jesus’ Name I pray. AMEN.

Tuesday, March 16, 2010

An Update & Request for Prayer: March 16, 2010

Most of you didn't know that I snuck away to Ohio State to consult with my leukemia specialist this week. :-) I have been bogged down on my blogging!

It was a difficult day at Ohio State. Dr. B was surprised (and I believe disappointed) to see how my health had declined since my August visit with him. My spleen and lymph nodes were larger; my hemoglobin and platelets had worsened; and my infection rate has increased.

When I asked Dr. B what my prospects are for survival with this palliative course I have been on, he told me I probably have "months to a year" to live - perhaps 2 years at most IF I didn't contract a life-threatening infection and IF my counts stabilized. Months aren't enough time for me to do all and see all and share all that I want to with my loved ones.

I've been told many times that I have "years" to live but never "months". It has been a difficult couple of days as I attempt to process this information. On our drive home, the song EVERYTHING TO ME (previous post on blog) played and I knew it was God speaking to me at that very moment of deep hurt and heartache. I have held that song in my heart today and know that ultimately, He will always be my everything, no matter how challenging the situation. I pray I can die gracefully and in a way that honors Him (but would really prefer to soar out of here at the Rapture).

IF I decide I want to treat (yet again) with another drug, Dr. B's recommendation was for me to try Revlimid (as he recommended last year when he sent me to the NIH). Arriving home,I discover that another leukemia patient had posted his own Revlimid account on his blog and this made me less intrigued by this treatment option as he has experienced some serious side effects (tumor flare).

Dr. B's logic in recommending Revlimid is that since I have such damage to my immune system and he has always felt I also have Common Variable Immune Deficiency, that with Revlimid being an immunomodulating drug (versus a chemotherapeutic agent) that despite Revlimid's risks (tumor flare, tumor lysis, neutropenia, thrombocytopenia) that it might be my best bet.

To enroll in this trial would demand much travel on my behalf. That is another downside - if I only have months to live, I don't believe I want to spend it away from my family. To be able to take the drug off-trial in our hometown, would make it a bit more appealing to me but that is not an option. The medication alone will cost $60,000 per year and since it is not FDA approved yet, insurance will not pay for it, thus the need to utilize it in the context of a clinical trial where the drug is provided by the manufacturer.

Knowing Dr. B and his OSU team were caring for me as I took this risky drug would give me much more peace than receiving this drug locally. As of tonight, I sense no direction to resume any treatment.

Please pray for the Holy Spirit's comfort for my family and me. And I need a big, heaping dose of God's wisdom! I trust Him alone.

PS - I developed some kind of infection in my lungs over the weekend. I was running a fever and had a nasty cough at OSU, so they wanted me to begin another antibiotic for that. Thursday, I will receive my second electroacupuncture treatment and on Friday, I will receive my all day IVIG infusion.

Monday, March 15, 2010

Everything I Need

When every step is so hard to take
And all of my hope is fading away
When life is a mountain that I can not climb
You carry me, Jesus carry me.

You are strength in my weakness
You are the refuge I seek
You are everything in my time of need
You are everything, You are everything I need

When every moment is more than I can take
And all of my strength is slipping away
When every breath gets harder for me
You carry me, Jesus carry me

You Are strength in my weakness
You are the refuge I seek
You are everything in my time of need
You are everything, You are everything I need

I need You
You are everything I need
I love everything about You

You Are strength in my weakness
You are the refuge I seek
You are everything in my time of need
You are everything, You are everything I need

To listen to this powerful song:

Thursday, March 11, 2010

A Prayer for Today: March 11, 2010

Father in Heaven,

Thank You for being our Comforter. As we experience so many life calamities all around us, there is nothing the enemy of our souls would like more than to see us wallow in worry. Today, I ask that you renew our minds, refresh our bodies, and give each of us a new lease on life THROUGH YOU.

Forgive us for the times we fail to trust and believe and we allow doubt to creep through the portals of our hearts. We are sorry, Father, for not trusting in You completely with the most difficult life challenges. For nothing is too difficult for You. You alone allow us to triumph through Christ Jesus! (2 Corinthians 2:14). Forgive us for doubting that the God who created the universe might not be able to handle our troubles.

Your Word instructs us: "Therefore I say to you, DO NOT WORRY ABOUT YOUR LIFE, what you will eat; nor about the body, what you will put on (Luke 12:22)." Help us, Lord, to absorb this command from you NOT TO WORRY ABOUT OUR LIVES. Thank You for being in charge. Thank You for never forsaking Your children. Your ways are always best for us, no matter how they seem to our flesh.

Thank You, Precious Lord, for seeing our tears and hearing our prayers and for uplifting our thoughts and spirits to You. In You Alone we will trust.

In Jesus' Most Powerful Name I pray. AMEN.

Wednesday, March 10, 2010

Electroacupuncture: The Human Guinea Pig Tries Again

Always being ready and willing to be a human "guinea pig" for the purpose of science, I have begun another Clinical Trial orchestrated by me! Some of you might recall that in January I began taking large doses of Vitamin B3 (after exhaustive research to uncover an answer to my chronic neutropenia) and I have been able to reverse over a year of neutropenia (low infection fighting cells). Daily, expensive Neupogen injections have been replaced with five 500 mg B3 capsules daily. A week of Neupogen would have cost $2800-$3500. A week's worth of Vitamin B3 - around $5.00.

I uncovered a study about a man with the exact leukemia that I have who used electroacupuncture to stimulate his bone marrow and to reverse his anemia (low red cells and/or hemoglobin) and thrombocytopenia (low platelets). Myelosuppression occurs from the treatment of leukemia and/or from the leukemia itself infiltrating the bone marrow where the blood cell lines are produced. Since my leukemia infiltrated bone marrow struggles to produce these blood cells, I decided that this alternative treatment is worth consideration. I asked my trusted family physician (also my acupuncturist) to review this literature and we agreed that it is a worthwhile endeavor.

Today we drew blood so that we can have a baseline reading on all of my counts prior to the electroacupuncture and then I received the first weekly electroacupuncture treatment. Please pray that God might use this very "off-label" treatment to produce miraculous results for me that will confound the best of physicians!

For those of you interested in acupuncture, these points are used in this protocol:

Table 1. Points Used in Electroacupuncture

Peripheral Nerve

Point of the Sea of Blood
Primary ramus

BL 17
Hui-Meeting point of Blood
Primary ramus

LR 3
Tai Chong
Nourishment of Liver Blood
Deep peroneal nerve
L5, S1

SP 6
San Yin Jiao
Three Yin Intersection
Tibial nerve
S1, S23

You might ask what is electroacupuncture? After the acupuncture needles are carefully inserted at the precise points, the needles are manually turned by the physician. Then electric wires are clipped to the needles and wired to other needles. A microcurrent generator releases a continuous cycle of electricity that stimulates the needles.

This particular group of points combined with the electrical current might have been a bit more painful than my normal acupuncture, however, I am willing to try anything that might benefit me.

This study is entitled: Reversal Of Chemotherapy-Induced Myelosuppression With Electroacupuncture by Gerald W. Grass, MD. It was published in the Medical Acupuncture Journal.

Tuesday, March 9, 2010

18 Months Old!

Eighteen months ago, a tiny, helpless grand baby would visit. He drank milk, produced diapers in need of changing, fussed a bit, and slept. That pretty much summarized his early days and weeks. When I began my services as his Nanny, he was six weeks old. Still the milk drinking, diaper dirtying, sleeping and a few more wakeful hours comprised our days together. Day by day, week by week, Lil Man began grabbing pieces of Grammy's heart. On his birth date, I never dreamed I could love him anymore than that moment when our eyes first locked, however, I was wrong. Very wrong.

Eighteen months of life as a Grammy have passed. My health permitting, I have cared for Lil Man five days a week while his parents work. The days and adventures with Lil Man could compose journals full of memories, milestones, and the deep love I have for him. Some days I write in his journal - love words that will remain for him to read long after I am gone. Other days, I post on my blog about him. When he is computer literate, he will be able to return to Grammy's blog, over and over, and be reintroduced to me each time, even if my physical life is no longer a part of his life. Most precious to me are the songs that my heart sings each time he kisses me, makes me chuckle, or cuddles in my arms.

New words and attempts at words surprise us daily. It is amazing to be able to communicate with words to Lil Man. He understands most commands and yesterday as I (mindlessly) sang the Veggie Tale song, "Oh, Where is My Hairbrush?", he ran to my vanity and returned with my two hairbrushes for me! He knew where Grammy's hairbrushes were. Bob (The Tomato) of Veggie Tales is a new favorite and Lil Man plants himself in his miniature leather club chair to watch his newly found friends!

I lay down at night, exhausted. My body is challenged from battling so many health problems yet God somehow, someway, grants me just enough strength for each day to continue my Nanny duties. These eighteen months have passed quickly and I pray that God will bless me with many more days and years to share with not only Lil Man but also the rest of my precious family.

Happy 18 Month Birthday, Lil Man!

Tuesday, March 2, 2010

20,000 Visitors

Tonight, the 20,000th visitor to my blog visited. I am amazed at technology that enables readers from around the world to locate and browse blog. Even more amazing is to consider the number of prayers that have been offered on my behalf through the prayer requests and updates posted here. I hope, in turn, that readers have been encouraged or uplifted by God's Word that I have posted. I pray that lives are changed and encouraged by the sharing of His awesomeness through my humble words and testimonies. Perhaps the lyrics to a song have uplifted your spirits. We've shared a few laughs, many tears, and almost two years of this fourteen year cancer expedition. I only wish that I had blogged sooner.

My original (and continued) purpose of this blog was to leave a written account of my life, my challenges, and the Source of Hope for my family and friends when I move onto my Heavenly residence. That original purpose expanded as I realized that readers were checking in from all around the globe. And with that new audience outside of family and friends, I write with these purposes - to introduce others to the God of the Universe and to share His hope and plan of salvation for each man, woman and child.

We are encouraged in 1 Thessalonians 4:18: "Therefore comfort one another with these words." While my words in no way compare to the anointed, God breathed words of the Bible, it remains my prayer that the words I type on this blog will uplift, comfort, and encourage each one who reads them.


Hope. Where would we be without it? I uncovered a song today by Natalie Grant - Our Hope Endures. My mind cannot fathom walking this cancer journey without the Hope from our Father. All would be lost without Him. Death would not hold the promise of eternal life awaiting me. Hope for a cure when medical science says there is no cure would be impossible.

Some of my favorite Scriptures about hope include:

Psalm 31:24
Be of good courage,And He shall strengthen your heart, all you who hope in the LORD.

Psalm 119:114
You are my hiding place and my shield; I hope in Your word.

Romans 15:13
Now may the God of hope fill you with all joy and peace in believing, that you may abound in hope by the power of the Holy Spirit.

Hebrews 10:23
Let us hold fast the confession of our hope without wavering, for He who promised is faithful.

Please take a moment to listen to the lyrics of this song: