Thank you for your prayers - I am back on track and tolerating the IV antifungal without anaphylactic drug reactions! The premedications seem to be holding the reactions back, although I don't relish receiving daily IV steroids (because steroids just further suppress immunity and fungal infections thrive with steroids). This is not a good situation for me but this is one of those times that we have to make tough decisions to keep me alive. I must receive this drug, so we will attempt to daily repair the damage that the steroids do.
Today I learned that my neutrophils dropped by almost 3000 since Monday. This drug is known to wipe out neutrophils, so the doctor ordered Neupogen injections. Again, a medication fixes one problem and then causes another problem. I received an injection today and will receive one at the cancer center tomorrow. Then Kevin will give the Neupogen to me at home over the weekend. We fix one problem and then another problem needs addressed. I am thankful that my veins are barely holding up - but so far I have avoided having to go for another PICC line installation.
Normally IV steroids give me all of this false energy. I go night after night without sleeping and usually I organize closets, drawers, whatever stands still. It is a bit neurotic, I will admit. Yet, it is always nice to have a shot of energy since I am always so fatigued from the leukemia. I am so worn out from this summer long medical marathon that my steroids are not even enough to get me moving this time! My mind still wants to organize but my body just comes home and collapses on the sofa, with a little brown faced dog tucked behind the bend of my knees.
How I spent my summer vacation: I have spent 13 days in Intensive Care this summer. I have spent 43 days at the cancer center receiving IV's of some variation. I have tossed in two sinus endoscopes, CT Scans, x-rays, a PICC line installation, a bronchoscopy, and 52 lab draws. And in my spare time, I have had 19 doctors' appointments. My summer "vacation" activities have cost over $150,000. What a trip I could have taken with that kind of cash.
No wonder I am exhausted ......
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