An Update for April 17, 2010

IVIG went well yesterday (I forgot to update my blog supporters about that treatment!). I had the CT of my lungs after IVIG but we will not have results until Monday. The cough and intermittent fevers continue that I have fought for almost a month. Please pray that a fungal infection or Pneumocystis carinii pneumonia is not the cause of the cough.

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.