Friday, September 11, 2009

Update & Request for Prayer: September 11, 2009

I am exhausted tonight. My day began at 7:45 when my parents picked me up to take me to the cancer center. I received the IV antifungal and the Neupogen injection.

Last night I had discovered five or six blistery eruptions on my chest and abdomen. At first, I suspected shingles, which are common in immune compromised patients (I have had three bouts with shingles). I asked the oncologist if he thought it was shingles and he did not.

Before I completed the IV antifungal, my family physician called me. Given that I have a second positive fungal infection on culture, she recommended that we begin therapy with Amphotericin B. This drug is known among patients and doctors as Ampho-TERRIBLE. It is a drug with numerous risks. My always-thinking family physician recalled a Mayo Clinic article where Amphotericin B was mixed and inserted directly into the sinus cavities versus daily IV's. We agreed that I would try this. She suspects that a fungal infection in my sinuses is "seeding" the fungal infections in my lungs. She is hopeful if we use Amphotericin B in the sinuses that we will see improvements in both locations. I am at the end of the road of antifungal medications - Amphotericin is the big, bad final option for fungal infections. I am desperate for this drug to work.

My doctor also recommended that I go for a CT Scan of my sinuses. I left the cancer center and went to the diagnostic imaging center. The CT confirmed some sort of infection in my maxillary sinuses on both sides.

After consulting with one of my trusted leukemia specialists, I decided that the skin lesions necessitated a visit to the dermatologist. There are a couple of skin reactions associated with Rituxan that often times are fatal. After begging and pleading with the dermatologist's nurse, they agreed to work me in late today. My Dad took me to the dermatologist and I ended up having to have a biopsy with stitches. She did not believe it is Stevens Johnson Syndrome (the dangerous Rituxan-related skin complication), so that was a major praise. It was not shingles. Another praise! However, until we receive the biopsy reports next week, we do not have a final answer regarding the skin lesions. It is possible it is another fungal infection or a list of other possibilities. The biopsy site is very painful tonight.

We left the dermatologist's office and Dad took me to meet my husband. He had gone to the hospital and purchased the Amphotericin B solution that the pharmacists had compounded. It looked like a two liter bottle of Mountain Dew. The doctor did not want me to take this medication at home so we took the first dose at the hospital and had to wait two hours. Thurs far, I have not noticed anything different except for the palms of my hands are itching. I will be taking this medication for at least three weeks. We returned home after 8 tonight.

I am run down, exhausted, concerned, disheartened, discouraged, and very sick and tired of being sick and tired. I truly need to witness some healing of these numerous problems in my body. I feel as though I am unraveling at the seams. I have so many physicians attempting to "fix" so many problems that just the organization and coordination of all of the doctors, medications, treatments, tests, etc. is an overwhelming task that I almost cannot manage anymore.

I am thankful to know that so many of you are praying for me. That is very comforting.

I'm counting on this:

Matthew 19:26
But Jesus looked at them and said to them, “With men this is impossible, but with God all things are possible.”

2 comments:

Michelle said...

Gosh, Stacie I am still praying for you. Never will stop for you.

BE STRONG!

Anonymous said...

My heart breaks for you. I cry to the Lord for your healing, for relief from the "sick & tired", for a clear touch of His hand! In Jesus' name.

Love ya!

Tina