Julia was at the hospital yesterday and it was a long intense day. It started with what I thought was just going to be a an ENT(ears, nose, throat) consult but to my surprise it was much more. Two doctors entered the room and proceeded to tell me that the CT shows something in the throat and its the same spot that uploaded on PET. I said you must be mistaken it was the PET that lite but CT showed nothing. The doctor left and re looked at that scan (at my request) and came back and confirmed that the scan shows that the right side of the throat is bigger and there's a ball like shape. He wasn't sure why the radiologist did not comment on this in the report. The next thing I knew I was being told Julia needed to have a biopsy to rule out disease. Her ENT doc was leaving that night and did not feel the surgery could wait so had already made arrangement for another surgeon to do it. In he came to introduce himself and have me sign all the consent forms. Therefore Julia is scheduled to go to the OR (AGAIN) on Wednesday morning. They will go in and look at the spot and take a sample to send to pathology. The pathology reports normally take up to 2 weeks to come back..........so needless to say the next 2 weeks will be agonizing. Then we headed to Oncology clinic and Julia has lost another 2 lbs. She is dropping weight so fast and has become so frail and weak. We are all concerned about the weight lose and may have no choice but to put in a feeding tube (Julia will absolutely hate this). The speculation of what this could be is driving me crazy.............is it a relapse of her PTLD? is it a new full blown Lymphoma? is it ebv negative PTLD? or is it nothing?
Julia's potassium was really high yesterday so we had to repeat it today and instead of driving all the way downtown we decided we would check it locally. To my surprise Markham Stouffville does not draw blood from a PICC line. So I had to go to Markham Stouffville and draw the blood myself from her line (I've never done this before) as the lab techs stood and watched me.
Things are very crazy right now as my days are consumed with taking care of Julia, trying to get food in her and my new job title....nurse!!! Absolutely crazy that 6 years ago if Anthony fell and scrapped his knee I would freak out and today I spend my days flushing Julia's PICC line, hooking up hydration, holding her down as her nurse gives her the injection (brutal), and now drawing blood and putting it in tubes......crazy life.
I will keep you all posted on how she does next week.