It's been a turbulent couple of weeks - up in the air again.... EBV raging

So I thought we knew what we had to do. Then the scans and labs seemed less scary than expected. Then labs from Dr. Raleigh, DO at Restoration Healthcare came back. HS-crp 67! She said I should be in bed. When she had covid with those kind of numbers, she thought she was dying and called her mom to say goodbye. Am I just so used to feeling bad that I don't notice? Normal is under 3. RBC and WBC counts high. Homocysteine high. And EBV seems to be raging. We wondered together if the idea of an infection in the heart from the port is possible. She wants me to take Keflex and get an intra esophageal echo to rule out heart veg. I didn't notice the high EBV numbers til we got off the zoom call. Of course I didn't hear back on the portal so I just started the antibiotic and we shall see. She wants labs redrawn to see if the hs-crp is getting better or worse. (which I did)

So I sent these lab results to the oncologist with pictures of the rash and a plea for help. I also told her the dermatologist thought it was a systemic allergy at the time. 

A couple evenings later, Dr. Mellott called. This oncologist was demonstratively annoyed by the info I had sent her. She inferred I just don't want to do "treatment." When I asked her questions, she essentially just repeated, "I've made my recommendation and it's time to do treatment." I feel like I need to be very ready for our appointment this Thursday. Is it good to start treatment when someone has active EBV? 

Today the dermatologist called to tell me the biopsy showed the rash is not the lymphoma, but probably the virus. It could have been a drug reaction but I'm not taking anything that should be that. I am still soooo itchy. The prescription antihistamine doesn't touch it and she's shocked about that. She told me to start taking Claritan twice daily. I thought it helped a little last night but I'm pretty miserable right now (afternoon). We will be starting Red Light therapy, to see if it helps, soon. My tooshy cheeks are red like cherries! 

So...we are up in the air again. I'm grateful and yet a bit restless about the whole thing. It's forcing me to stay very much in the present or I'll go crazy. 

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