An Update & Request for Prayer: August 4, 2010

I offer my apologies for the delayed update. I have pondered and prayed over this update for many days (weeks). My leukemia journey has been sliding down a precarious pathway for the past year or so. If someone had told me when I was diagnosed, 14 years ago (on this August 18th), that my disease course would be so rocky, I would not have believed it and probably would have given up years ago.

This has been a perfect example for all of us to live each day fully and not to put off until tomorrow what we should do today. I encourage each person reading my blog to live life fully and to treasure each today, no matter your circumstances.

More importantly, if there is someone reading these words and who has yet to make Jesus the Lord of his or her life, I encourage you with all of my heart to make that commitment. “For whoever calls on the name of the Lord shall be saved” (Romans 10:13). Throughout this lengthy battle, I would not have survived the stress and strains without the presence of my Heavenly Father. For the hundreds of days that I have spent in ICU, I have rejoiced for all of the times He has reached down and rescued me and blessed me with more days with those I love. Of the most importance is the knowledge that I have my eternal destination determined. Death is not final for those of us who have confessed our sins and acknowledged Jesus as the Lord and Savior of our lives. When I exhale my last breath, I will be transported in a blinking of an eye to the throne of my Father. As these earthly days become more and more challenging, my new life in Heaven gains appeal. No pain. No tears. No heartache. No suffering. I will run on streets of gold to my mansion. The heavenly voices of the angelic choir will fill my ears. The presence of God will be beyond my comprehension.

Isaiah 43:2: “When you pass through the waters, I will be with you; and through the rivers, they shall not overflow you. When you walk through the fire, you shall not be burned, nor shall the flame scorch you.”

As I pass through these waters, I am not going to be burned. Everything in my flesh is trembling and confused and at times, overwhelmed. Yet, my spirit remains steadfast. To update my blog, I will have to type many negative findings and updates. These are the opinions of mortal men and women and we must never forget that our Lord reigns and He is the God of the impossible. I will never give up on a miracle slipping down from the Heavenlies to me. If that is not His plan for me, my soul is secure and I am ready for the heavenly journey ahead. God always knows best!

Despite the ICU stay in June and subsequent 21 days of IV antifungals, in the past two weeks, I have had three positive lung cultures return (AGAIN). I continue to have a productive cough, fevers, and some shortness of breath (especially on a day like today with a heat index of 117 degrees). It is difficult to believe this, but I have had some sort of infection every day since early September 2009. That is ten months – over 300 days -- of nonstop infections. Just the infections alone and their treatment are very draining to me. Such is life with a ship-wrecked immune system.

When I battled viral and bacterial infections early in my leukemia trek, I was always told that they would be relatively simple to diagnose, treat and recover from when compared to these nasty fungal infections. I believe that wholeheartedly. I better understand why so many people die from fungal infections when I see cultures taking 4-6 weeks and sometimes longer to provide identifications and sensitivities on the cultures. We will re-culture me this week to see if other pulmonary infections have developed since I remain symptomatic.

Recently, I have had several fungal skin infections on my trunk. We have been watching a new patch of something abnormal on my right cheek. Today, my doctor did a scraping of that to determine if that is fungal in nature. We will wait ………

The leukemia beast is rearing its nasty head – I have worsening of all B-symptoms - symptoms that oncologists follow that indicate disease advancement. Night sweats, fevers, splenomegaly (spleen is over a foot long in the longest dimension and it misplaces other organs when it is this large). My liver is also enlarging (hepatomegaly). The fatigue and pain levels have diminished my quality of life. In addition to the leukemia, the IV steroids I required in the hospital caused weakening of my muscles and despite going to the gym four nights a week prior to the hospital admission, I struggle with normal daily activities.

The doctors do not believe I can survive splenectomy (surgical removal of spleen) due to my infection risks and I still cannot locate a team that will attempt low dose splenic irradiation. After reviewing 20 years’ worth of studies on leukemia and low dose splenic irradiation, I still believe that it could have value to me. But who wants to listen to me?

I have consulted with several of my leukemia specialists and the consensus is unanimous – if I do not treat the leukemia, it will kill me. If I do treat the leukemia, an infection will likely kill me. One doctor told me it is not a matter of “if” an infection will kill me, it is “when” an infection will kill me. Another trusted specialist told me, "Untreated, you are going to succumb to infection sooner or later. Treatment might kill you sooner." We are so accustomed to medical science always having an answer for our health challenges. This situation is what some would deem in earthly terms - being between a rock and a hard place.

I had a difficult time with IVIG a couple of weeks ago. Since an allergist developed my current protocol (heavy premedications and an eight-nine hour infusion), I have tolerated IVIG well. That was until last month. I was very ill during the infusion and then later that night, the infusion site developed a hive-like rash. It had to happen on a Friday night when my three main physicians had all left on vacation! I spent the night popping steroids and Benadryl and applying prescription strength steroid cream to the rash and lo and behold, Dr. Stacie had it taken care of before the sun rose the next morning. We are trying to determine if the Opsite material that covered the IV site contained latex. If I am developing a latex allergy then we need to determine this.

I have a plan for today – notice I type “I”. I still need additional prayer about this plan as I am not 100 percent certain that all of the details are in line with God’s plan and I do not want to step outside of His direction for my life. My consultation today with my trusted family physician helped me to finalize some of the outline of this plan. I want God-breathed details and guidance to fill in the blanks of my outline. I am going to attempt – if I can secure some help – to return to the strict protocol I was following prior to my hospital admission. It is exhausting to coordinate the strict dietary guidelines, exercise, supplements, etc. and is something I cannot do on my own. My doctor went as far to say that even if I must hire someone to help me, this is about saving my life and that is what I will have to do. This protocol is from the Integrative Cancer Center I visited in Chicago in April. My family doctor believes I need to focus on regaining strength and supporting my fractured immune system. My CD4 T-Cell counts are lower than an AIDS patient right now and that opens an entirely new can of worms for me with regard to infection risks. I recently read in the Christian magazine, Charisma, an article about a missionary’s work with AIDS patients in Africa. They had seen increased CD4 T-Cell counts in these patients as they administered a product containing sea minerals and other natural products. I am trying to track down this missionary and the product to inquire if I can obtain it in the States and if he believes it will help non-AIDS patients who have T-Cell defects. Reversing my spiraling trend of falling T-Cells would be of great benefit to me and would result in fewer life threatening infections.

I had been considering an European protocol that used low dose chemotherapy agents Fludarabine and Cytoxan with elderly leukemia patients who were too weak for standard treatment. Most faired extremely well on the protocol and I had even discussed it with the Italian trial investigator. However, once we learned of the very low T-Cell count (and knowing that Fludarabine is the ultimate enemy of T-Cells), I have had to stop and reconsider that protocol. The Cancer Center in Chicago discussed fractionated chemotherapy with me. This is used in other countries and uses doses as low as 1/5 of the standard dosage of chemotherapy to treat end stage patients. Some protocols infuse the drugs with a pump over many days versus over a few hours to help limit toxicities. Makes perfect sense to me.

This has appeal to me and seems quite sensible. Yet, I am all too familiar with the inflexibilities of the USA’s medical system and insurance companies. Once I decide upon which chemotherapy agent I might consider using in fractionated doses, then I have the task to convince doctors and the insurance “gods” to orchestrate and pay for the protocol. So much to accomplish and so little stamina to do it!

The Mercy Me song “Hold Fast” has offered immense encouragement to me this summer. The lyrics remind us:

To everyone who's hurting To those who've had enough To all the undeserving That should cover all of us Please do not let go I promise there is hope

Hold fast
Help is on the way
Hold fast
He's come to save the day
What I've learned in my life
One thing greater than my strife
Is His grasp So hold fast

Will this season ever pass?
Can we stop this ride?
Will we see the sun at last?
Or could this be our lot in life?
Please do not let go
I promise you there's hope

You may think you're all alone
And there's no way that anyone could know
What you're going through
But if you only hear one thing
Just understand that we are all the same
Searching for the truth
The truth of what we're soon to face
Unless someone comes to take our place
Is there anyone?
All we want is to be free
Free from our captivity,
Lord Here He comes

You Tube Video Link: http://www.youtube.com/watch?v=uWejcH0JWTc

So, I am holding fast. For my family and friends who read this, who might shed a tear for me, let me encourage you that we are not alone. God remains very near to each of His children even when the day is the darkest and our hearts are the most troubled. Hold fast, my dear ones, hold fast.

(And thank you so much for your prayers and encouraging posts!)