Monday, October 25, 2010

An Update & Request for Prayer: October 25, 2010

I received my first of four Prevnar 13 (pneumococcal) vaccines this morning. The logic behind vaccinating me with childhood vaccines is if my immune system can mount some kind of response to the vaccine, it will provide me with some level of protection against pneumococcal infections. (Next Monday I will receive the first of four doses of the HiB vaccine). Tonight, I feel unwell, am running a fever, my arm is warm and tender. Yet, to me, this indicates that my poor immune system is mounting some type of response! I guess I will get my bottle of milk, take some infant Tylenol, snuggle up with my baby blanket and nurse my vaccine side effects (just kidding).

We learned that my ANC (Absolute Neutrophil Count) was 500 today - not a good level of neutrophils since 500 and below is the most serious level of neutropenia, so Kevin just left for the pharmacy to pick up the $4500 box of Neupogen injections and my $5000 refill of Posaconazole for the month. The prescription plan loves me on this week when we refill these two expensive drugs (along with five others) and have over $10,000 in prescription charges.


My platelets had dropped back down to the 80,000 range (under 100,000 indicates Stage IV leukemia), so the steroids' effect appears to be short-lived on my counts.

All of us were with our daughter at the Heart Walk on Saturday. She came down with strep throat yesterday (the down side of being a nurse practitioner, caring for sick people everyday). My family doctor just contacted me and said my infectious disease doctor wants me started on another antibiotic to protect me from strep - normally, we go to the hospital and take this drug (no desensitization but I have to be near the hospital). I am too tired and feel too lousy tonight, so I am going to say a prayer and take the first dose at home. Say a prayer that I will not have another drug reaction.

Talk about the fright of my life today - I saw the oncologist prior to my vaccine for labs and to review my flow cytometry report. He sat, pondering the report. He asked me a couple of questions about the past flow results and I pulled out my 2008 flow report from my OSU oncologist. He told me that he was going to have to do some research to figure out my report.

So I asked him to review it myself. He handed it to me and left the room. In the interpretation section of the report, it stated, "Tranformation likely. More testing is indicated." My heart just sunk and I knew immediately that the splenic irradiation was now a mute issue and I knew I would die quickly because I could not survive the treatment for Richter's. Suddenly, I glanced back down at the report and realized, IT WAS NOT MY REPORT! It was L's report - someone had placed her cover sheet on my other pages. For a moment I whispered a prayer of thanksgiving to God but before I could utter all of the words of my prayer, my heart and thoughts returned to L. - yes, I had not received this life-changing news, but someone else was about to learn of her poor prognosis. So, please pray for L. - a woman I have never met, but whom is in need of our prayers.

I dropped off all of my records at the radiation oncologist's office when I left the cancer center. They laughed when they saw my 5" binder of records and I told them that those were the most pertinent records - the rest I had left in two four-drawer file cabinets! Keeping up with 14 years of medical records is no easy task.

Late today, we learned that the insurance has rejected again our request to cover the milk. This was quite disappointing. I will look into the appeal process, but to date, I have never won an appeal against them. So sad, given the positive results we have observed!

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