Update & Request for Prayer: June 28, 2010

Today I am receiving my eight hour IVIG treatment. I will try to update the blog despite my medication hazed brain. I received my IV treatments on Saturday and Sunday at the hospital. All twenty-one days' treatments are now infused. However, I have had a really bad few days - probably the worst since being admitted to ICU three weeks ago today. Cough worsening, blood coming out of the sinuses, fever, bad headache, and no energy. My WBC has increased by over 300% since I was admitted to the hospital. This is another indicator that either an infection is not being cleared or the leukemia is rearing its ugly head again.

A praise to report though - on Saturday we learned that the bronchoscopy cultures had revealed I DO NOT HAVE PCP ~ p carnii pneumonia. This is the life-threatening pneumonia that threatens immune compromised patients. We are awaiting other stains and cultures from last week's two scopes. We had hoped that pathology could review the bronchoscopy and endoscopic samples to see if the leukemia has infiltrated my lungs and/or sinuses. Unfortunately, the slides to do this are different than the slides for culturing, so we could not obtain these answers. We are baffled and puzzled why my symptoms are not improving. My Infectious Disease doctor said with continued worsening of symptoms, that we have to consider that the fungal infections have become resistant to the IVs I have just completed and the oral and intranasal antifungals I continue taking. If that proves to be the case, I will have to take Amphotericin B IV's. Please pray this will not be the case. Amphotericin is a horrible drug to take - it is actually referred to as Ampho-Terrible by patients and physicians alike.

On a positive note - I have been seen by Dr. M., a leukemia specialist at the NCI - National Cancer Institute - (Washington, DC) for over a decade. Early on after my diagnosis, I decided to use leukapheresis to help control my very quickly escalating WBC (it was over 200,000 at that time). I located a paper written by this Dr. M., I contacted him, and we began a long-term doctor-patient relationship that has endured for over a decade. I cannot believe that I have outlived his career as his retirement from the NIH will occur this week.

He has treated me and known our girls since they were young pre-teens. While I was still in ICU, he e-mailed me and told me that he will be traveling from DC to Iowa to visit family and that he wanted to come to our home to visit. I told him what a house call that is for a doctor to make. So we are eagerly looking forward to Dr. M. arriving mid-week. In May 2009 when I returned to the NIH, Dr. M. had the unfortunate task to tell Kevin and me that I was "end stage CLL". When we left the NIH, I didn't think we would ever get to see Dr. M. again - but God has kept me alive and kicking and now we will have the honor of his presence at our home. Is that an amazing doctor or what? :-)

I remembered I had not updated on the bronchoscopy and sedation. Most of you know that I am never sedated for procedures because of my drug reactions risks. I just bite the bullet, face the pain and endure what I have to endure. For patients like me who do not use alcohol, drugs and pain medications/sedations, sedation can really mess us up. Such was the case last Thursday with my bronchoscopy. I declined the two sedatives before going to the procedure room and told them if I could endure it, I would prefer not to be sedated at all. I began coughing a lot midway through the procedure, so I had to be given a small amount of sedation. Now I will be harassed about the outcome of that sedation for years to come.

As soon as the pulmonologist brought Kevin back to see me, he told Kevin that he had never performed a bronchoscopy with the patient talking the entire time. That is a feat in itself to talk with a scope down your throat into your lungs! I had been listening to my MP3 player during the procedure and it is loaded with all of my praise and worship music. I was convinced that there was a song about beer drinking and partying on the MP3 and I couldn't figure out how it had gotten on there. (I have reviewed all my songs and no such song exists, but I was convinced that is what I had listened to during the sedation.)

Kevin said that I was "nuttier than a fruitcake" when I returned to the recovery room. I kept asking him to get a ladder (I guess I was plotting my escape). He said I did a lot of singing - and we all know how poorly I sing! He said I kept trying to call people and he was advising me against that. I told one of our daughters it would take about a year for me to receive the culture results (it often seems as though it takes a year!) And there were a few other escapades. I knew better than to be sedated!

Thank you for your continued prayers.