An Update & Request for Prayer: January 29, 2010

I have been away from the blog for too long. I am reminded when friends e-mail me to confirm I am not in the hospital (aka "the slammer") that it is time to update the blog. It has been a trying week or so. In the natural realm, I see my body crumbling, yet I continue to trust in Him to sustain me. I return over and over to Romans 4:

"God, who gives life to the dead and calls those things which do not exist as though they did; who, contrary to hope, in hope believed, so that he became the father of many nations, according to what was spoken, “So shall your descendants be.” And not being weak in faith, he did not consider his own body, already dead (since he was about a hundred years old), and the deadness of Sarah’s womb. He did not waver at the promise of God through unbelief, but was strengthened in faith, giving glory to God, and being fully convinced that what He had promised He was also able to perform. And therefore “it was accounted to him for righteousness.”

I need Him to give me (and my other leukemia cohorts) LIFE. We need the faith to call those things which do not exist (remission/cure) as though they did. I don't want to grow weak in faith or consider "my own body". We must not waiver at God's promises! And may He overcome our own doubts and fears so that we are strengthened in faith! I believe there are so many spiritual clues for us in this passage.

Yesterday, I spent over two hours at the doctor. I have had fevers off and on all week and we continue to be baffled. We restarted another antibiotic with the assumption it is the sinuses causing the fever. Although difficult to discern, the leukemia itself can cause fevers.

The doctor wanted a urine sample and it contained blood so she sent it onto the hospital laboratory for culturing. Gram negative rods (bacteria) grew out on culture, yet the count was more reflective of a contaminant.

I am having shortness of breath and the doctor said my iron levels are now dangerously low, in addition to a low hemoglobin (oxygen carrying blood component). The doctor said I need weekly IV iron infusions, however, "normal" people have serious reactions to iron and she believes it is too risky for me (with my drug reaction history) to try the IV iron infusions. My doctor wrote an appeal letter to the insurance to seek coverage on a prescription iron formula that might benefit me. My blood pressure was also low today.

I was just above the threshold of needing another Neupogen injection (Kevin gave me one on Wednesday). All CBC results were abnormal.

My doctor at the NIH e-mailed me with preliminary findings of their review of my MRI's. It appears that the marrow has been replaced by the leukemia and no normal marrow signals could be found in my vertebrae and hips. My estimation is that a great deal of my pain is coming from this marrow infiltration.

My spleen and lymph nodes have enlarged. My spleen tip is now back below my belly button (how is that for a medical term). I wasn't surprised about the spleen because I have not been able to sleep on my left side this week due to the spleen pain. It doesn't appear that the $160,000 worth of Rituxan treatments last summer gave me much "bang for my bucks"!

My toenail has been damaged from the nerve damage in my foot/leg/back. It had to be removed last night. I didn't want any more chemicals in my body, so I passed on the anesthetic. My daughter said, "Are you nuts, Mom?" That is quite possible .......

I have barely been able to keep going this week, so I initiated a discussion about Provigil or Ritalin to try to improve my strength. It has been used for fatigue in cancer patients (off-label). My doctor is going to do some research to see if either drug is one that I might be able to tolerate.

I have been reviewing a new treatment that is being studied in Phase 1 clinical trials. The agent is known as ISF35 - it is an immunotherapy treatment that will not further damage the immune system. Two end stage patients, like myself, achieved complete Minimal Residual Disease (negative) remissions. This is the deepest level of remission achievable by patients with my type of leukemia. Please pray that this agent will prove to be successful and will advance quickly through the clinical trial process. Currently, the drug is available only at the University of California San Diego and MD Anderson in Houston, Texas. I don't know that I could endure the travel required for the trials. I see glimmers of hope in this drug. May God offer wisdom to these researchers and allow this to be a possible treatment that could benefit me. It is being administered either via IV or as injections into the lymph nodes.

Which reminds me of a funny experience. Early into my leukemia journey, I researched a Canadian drug that was being studied in leukemia. It had to be injected into the lymph nodes in the groin - very, very s-l-o-w-l-y. Always the open minded guinea pig, eager to whip leukemia into the next universe, I decided to give this drug a try. We ordered it from Canada and my Mom was trained to administer the injections. Before the injections, an ice pack was to be placed on the groin to help numb the area. The needle had to be held in the lymph node and the medication dripped in over 7-10 minutes. My ice pack must have been TOO cold and I emerged with a dandy case of frost bite to the groin area. I went to the doctor and she diagnosed the frost bite and said that might be a medical first. Such is life as a human guinea pig..... I am pretty open to novel therapeutic options and perhaps God will open a door for me to this new ISF35 drug.

Thanks for your continued prayers!