Friday, April 23, 2010
I received Neupogen last night and will go to the hospital lab over the weekend for a blood draw to recheck the neutrophil (infection fighter) count. In reviewing my notes, when I last had positive fungal lung cultures, I began a 10 day cycle of the Neupogen injections as I awaited the results. I am contemplating this possibility as one way that I could intervene somehow as this waiting game continues. It seems that the Neupogen injections will offer my body a fighting chance at arresting the fungi, as I await the results that will tell us the specific antifungal drug that will be needed to treat the infections.
Most IV antifungals require 3-4 weeks of daily IV's. Last September-October when I last received the IV antifungals, it was a nightmare trying to access my very tired veins daily. We speculated at that time, if another lengthy course of IV therapy was required, that I would have to consider the placement of a PICC line (Peripherally Inserted Central Catheter). This catheter would be inserted into a deep vein that would lead to a vein near my heart. It would have the benefits of my not having to be stuck daily in search of an IV site. After being desensitized to a medication at the hospital or oncology center, I would then be able to administer my IV's at home to myself. This saves time and energy making daily trips to the infusion center, however, a PICC line will not be without risks - especially with someone as immune compromised as I am. The threat of an infection in my blood stream will exist and is of great concern. Please pray that I will know with certainty if I should have this procedure to insert a PICC line and that I will locate the exact physician and location that will provide extreme details to its insertion.
I will begin using the pain patches this weekend that the pain management doctor prescribed yesterday. Hoping that they will be helpful and allow me to sleep for longer periods of time.
An interesting, inspiring experience I had today - in the mail I received a package from Japan. I had read a Japanese study on immune system deficiencies. I had e-mailed the author of the paper - the leading immunologist in all of Japan - he graciously responded to my e-mail and offered to mail me a copy of his book that focuses on rebuilding the immune system. True to his word, my book was delivered today (with beautiful Japanese postage stamps). The Internet has opened so many doors for me with medical professionals from all around the world. Truly, one of the positive uses of the Internet. Thank you, Dr. Abo.
Thursday, April 22, 2010
I am neutropenic again and will resume the Neupogen injections today. I had found it unusual that I have been neutropenic for two weeks in a row, since the Vitamin B3 had been doing such a great job with my neutrophils. I had told my doctor this week that I suspected I have an undiagnosed infection since the platelets and neutrophils both crashed last week. Often times, my counts will drastically decline in the presence of infection. Pretty good analysis, huh?
I saw the pain management anesthesiologist this morning. He did not feel that with my counts, history of anaphylaxis and level of immune suppression that I would be a candidate for spinal epidurals for pain. He said the nerve damage to my lower calf and foot is permanent and not reversable (I know Someone who could reverse it). He prescribed pain patches that I will begin trying this weekend by wearing four at a time (24/7) and he recommended that I begin the narcotic pain medicine (that I prefer to avoid) that my family doctor had recently prescribed. I hope the pain patches will help since the epidural option has now been eliminated.
I am asking God to intervene if He knows I need IV antifungals sooner than later (when sensitivities are known); I am asking Him to protect me from invasive fungal infections; and I am asking Him to give my doctors and me wisdom to do what is in my best interest.
My family doctor said my local oncologist was also on the same flight with her - so my local medical team is in Sunny Florida!
Thank you, friends.
Sunday, April 18, 2010
“This is the day the LORD has made; we will rejoice and be glad in it (Psalm 118:24).
My heart leaps with joy when my eyes awaken to another day, Father. As Psalm 96 instructs us, enable and equip each of us to “proclaim the good news of His salvation from day to day”. Those are our marching orders from You, Our Heavenly Father – remind us daily to go about Your Work of sharing the Gospel – allow our lives to preach the Gospel as clearly as Your Word teaches.
Forgive us of our sins and shortcomings. Enlighten us to the aspects of our individual lives that do not honor You, Lord. Make us and mold us into Your Almighty image.
Strengthen caregivers. Heal the infections that so many are battling. Allow those in treatment to be without complications. Restore families who are immersed in life struggles. Allow discoveries to be made speedily for the advancement of a cure for all of those battling cancer, diabetes and heart disease. For those who are losing this battle, continue to amaze the world with miracles that rescue and restore us. We ask for Your favor to rest upon each of us and our families.
Thank You, Lord, for the gift of life and the promise of life eternal with You, that is provided through our willingness to accept Christ into our lives. We are grateful.
In Jesus’ Mighty Name I pray. AMEN.
Saturday, April 17, 2010
Last Sunday I began running higher fevers. Sunday we suspected a UTI because my back pain worsened and my urine was very cloudy. We took a urine sample to the hospital Sunday evening and they performed a urinalysis and culture. The urine culture has not grown anything bacterial but it was very alkaline with lots of crystals. Unless something fungal grows out on the culture, I guess the UTI was not the culprit.
I developed a large fungal infection on my skin this week and required additional antifungal for that (for a total of three antifungals)! It is improving.
After seeing weeks of positive electroacupuncture results, my platelets dropped by almost 50 percent this week. We are quite puzzled. I am hoping it is not ITP, an automimmune disorder that leukemia patients can develop where the body attacks its own platelets. I am inclined to believe that my enlarged spleen is sequestering platelets. Give them back, spleen.
Also shocking, after weeks and weeks of not requiring Neupogen (after beginning the Vitamin B3), my neutrophils tanked and I will receive a Neupogen injection today (the doctor didn't want to administer it yesterday with IVIG since I react so strangely).
My local oncologist spent alot of time with me yesterday. It was the first opportunity I had to tell him that I had been told the "months to a year to live" news. He was visibly shaken as he has been my local oncologist for over a decade. He has told me that I have outlived all of his other patients with this "brand" of leukemia.
I told him of my scheduled trip later this month to the Block Center for Integrative Cancer Care in Chicago. He was supportive and realizes if I am ever to receive any additional treatment that I must strengthen my immune system. This Center uses an integrative approach - spiritual, nutritional, supplements, physical therapy, stress reduction and creative chemotherapy techniques. It was truly a miracle that my insurance case manager obtained approval for this consultation. Please be praying for us to receive helpful information on that trip.
I have been inquiring about a couple trials in Europe and will post more as I learn more about them.
This month has been extremely hectic. I began weekly physical therapy and Chinese massage two weeks ago. I hope to see improvements with the chronic pain. I did sleep two full nights after the Chinese massage so that was a relief for someone who never sleeps an entire night.
Last week I also had my annual eye examination. Good news! The pressures in my eyes had increased to borderline glaucoma levels due to the chronic use of steroids. Last week, my pressures were completely normal and there continued to be no signs of the leukemia infiltrating my optic nerves. Always music to my ears to hear this about my eyes!
This coming Thursday, I have a consultation with a pain management doctor to see if anything can be done for the four herniated discs/nerve damage pain. Please pray for him to be able to offer some sort of safe pain relief. I anticipated that he would want to put steroid injections into the discs, however, with a platelet level of 70,000, no one will touch me to perform an invasive procedure.
I am worn out just from trying to juggle all the appointments. I am thankful for everyday that my eyes awaken to another sunrise. I am focused on Him and His promises and not the predictions of doctors that say I might only have months to a year to live. Regaining that focus and striving daily to maintain my focus are strategic keys to living life fully in the midst of dire predictions. And I am only able to do these things by the empowerment of the Holy Spirit and by His grace. Thank You, Lord.
Thanks for all your prayers. I know they are sustaining me - leukemia is demanding so much attention, appointments, and energy right now that it is a constant challenge to carve out a niche of life for living. I am sure many of you understand this ongoing challenge.
I remain hopeful and grateful to God for each day that He is blessing me with and for the perfect peace He Alone supplies.
Wednesday, April 14, 2010
Flowers are the sweetest things God ever made, and forgot to put a soul into. ~Henry Beecher, Life Thoughts, 1858
'Tis my faith that every flower enjoys the air it breathes!~William Wordsworth, "Lines Written in Early Spring," Lyrical Ballads, 1798
I perhaps owe having become a painter to flowers.
I will be the gladdest thing under the sun!I will touch a hundred flowers and not pick one. ~Edna St. Vincent Millay, "Afternoon on a Hill"
Earth laughs in flowers.
~Ralph Waldo Emerson, "Hamatreya"
Photographs by Stacie
Friday, April 9, 2010
Listen to "Safe" performed by Phil Wickham:
To the one who's dreams are falling all apart
And all you're left with is a tired and broken heart
I can tell by your eyes you think your on your own
but you're not all alone
Have you heard of the One who can calm the raging seas
Give sight to the blind, pull the lame up to their feet
With a love so strong and never let you go
oh you're not alone
You will be safe in His arms
You will be safe in His arms
'Cause the hands that hold the world are holding your heart
This is the promise He made
He will be with You always
When everything is falling apart
You will be safe in His arms
Did you know that the voice that brings the dead to life
Is the very same voice that calls you to rise
So hear Him now He's calling you home
You will never be alone
These are the hands that built the mountains
the hands that calm the seas
These are the arms that hold the heavens
they are holding you and me
These are hands that healed the leper
Pulled the lame up to their feet
These are the arms that were nailed to a cross
to break our chains and set us free
Saturday, April 3, 2010
On a hill far away stood an old rugged cross,
the emblem of suffering and shame;
and I love that old cross
where the Dearest and Best
for a world of lost sinners was slain.
So I'll cherish the old rugged cross,
till my trophies at last I lay down;
I will cling to the old rugged cross,
and exchange it some day for a crown.
O,that old rugged cross, so despised by the world,
has a wondrous attraction for me;
for the dear Lamb of God
left His glory above
to bear it to dark Calvary.
In that old rugged cross,
stained with blood so divine,
a wondrous beauty I see,
for 'twas on that old cross
Jesus suffered and died,
to pardon and sanctify me.
To that old rugged cross
I will ever be true,
its shame and reproach gladly bear;
then He'll call me some day
to my home far away,
where His glory forever I'll share.
Lyrics and music by George Bennard
Thursday, April 1, 2010
May the praises of our hearts and the prayers of our souls always be to never give up on God because He won't give up on us. May we never be tempted (by Satan) to curse God and blame Him for difficult experiences. God allows us to pass through the deep waters so that we can better "swim" upstream during all of tomorrow's floods of trials and tribulations.
After catastrophe heaped upon catastrophe for Job, his wife remarked: “Do you still hold fast to your integrity? Curse God and die!” (Job 2:9).
And Job's inspiring remark to her was, "You speak as one of the foolish women speaks. Shall we indeed accept good from God, and shall we not accept adversity?” In all this Job did not sin with his lips." (Job 2:10).
These reflections uphold my beliefs and the words of this Mercy Me song - good times and bad times will comprise our lives. If we trust God with bringing us to the good times, we can trust Him even more to bring us through the bad times.
Enjoy these lyrics of the Mercy Me song, "Bring the Rain":
I can count a million times
People asking me how I
Can praise You with all that I've gone through
The question just amazes me
Can circumstances possibly
Change who I forever am in You?
Maybe since my life was changed
Long before these rainy days
It's never really ever crossed my mind
To turn my back on you, oh Lord
My only shelter from the storm
But instead I draw closer through these times
So I pray
Bring me joy, bring me peace
Bring the chance to be free
Bring me anything that brings You glory
And I know there'll be days
When this life brings me pain
But if that's what it takes to praise You
Jesus, bring the rain
I am Yours regardless of
The dark clouds that may loom above
Because You are much greater than my pain
You who made a way for me
By suffering Your destiny
So tell me what's a little rain?
So I pray
Holy, holy, holy
Is the Lord God Almighty
To listen to the song: http://www.youtube.com/watch?v=e8HgAVenbUU