An Update & Request for Prayer: February 1, 2010

I have always pondered how much pain the human body can endure and I think I might have reached my limit overnight. I was up crying all night. In addition to the "normal" pain from my enlarged spleen/herniated discs/and leukemia packed vertebrae and hips, the lower right leg and foot pain (nerve damaged from herniated disc) peaked.

I have foot drop (dorsiflexion) from the nerve damage from the herniated discs from the steroid use for the leukemia. Isn't it amazing the downward spiral a drug or condition can throw the human body into?

The doctor told me last night week that I was losing one group of muscles in my lower leg. On Sunday morning, my foot locked in the "dropped" position when I awoke -toe pointed out - and Kevin had to literally snap it back into place. Overnight that continued and the foot began twisting sideways in contorted cramps.

Today, my doctor strongly recommended that I make my decision on what pain medicine I am going to begin. It is a battle to select one with my past history of anaphylaxis and complications with NSAIDs and codeine and morphine rashes. She recommended Fentynyl or Oxycontin.

I will have a CBC tomorrow to see if I require Neupogen. It is the first full week I have gone without an injection while on the Vitamin B3 - I think it will be telling if the B3 has improved the neutropenia.

The fevers continue. We are rotating some drugs around for the (assumed) sinus infection. If temperatures do not stop in a few days, I will have to go to Indy to the ENT for a scope to obtain sterile cultures.

I awoke with an infection in my right eye - the doctor prescribed Tobramycin eye drops.

An MRI on my lower leg/foot, a check of my magnesium levels, and a possible pain management consultation are all possibilities on the ever-growing Medical To Do list.

Last week, my unrelenting research uncovered a new drug being studied in very early clinical trials that might benefit me. ISF35 is an immunotherapy drug - thus, it shouldn't induce more immune suppression for me. Cells are removed from my own body, manipulated in the laboratory and reinfused into my body in an attempt to prompt my immune system to attack the leukemia.

Two end-stage patients have received minimal residual disease negative (MRD-) remissions (deepest remission with this type of leukemia) with this drug. Unfortunately, the two current trials are in California and Texas - both requiring a great deal of cumbersome travel. Today I heard from a Memgen executive (pharmaceutical company where ISF35 is produced). He told me that more funding has been received for ISF35 trials and more ISF35 trials will open -perhaps one in Indianapolis in late spring. God knows best what I need.

Thank you for your prayers. I don't know if I can make it through another night like last night on my own strength - but I can with God's strength and comfort!