No news is, well, no news

Dear Friends,

I am out of the hospital with a few more answers, many more punctures, and much more determination to stay away from the hospital.

When I went in on Friday night, I thought what I had was a straightforward case of CMV, not that I really knew what CMV was. From what I understand, most of us have had this virus floating around in our bodies at some point in our lives but our immune systems can fight it off so we don't even know we have it. For those of us who are "im-MEW-no-sah-PRESS-ed" (as the kindly doctor so informatively explained to me), it becomes a problem. Apparently my viral load was through the roof at 75,000 (not sure of the units here) and that caused enough concern that they wanted to start me on an anti-viral IV asap. I had a CT scan of the pelvis, abdomen, and chest on Saturday morning and met with the infectious disease docs later that day. The ID doctors, having never seen a presentation of CMV as lumps under the skin, decided that my symptoms were due to something else entirely and began on a line of questioning that included things about chicken coops and caves.

Of course, all the answers lie with the biopsy that had been done on Thursday. I thought we would get the results on Friday, but no. Then we tried for Saturday, still nothing. It seems that the pathology folks have taken a long weekend because even this evening there are no answers. As I mentioned before, they did show some abnormal cells, but after getting the information about the CMV, it seemed likely those were the abnormal cells. Still, there's lymphoma and other types of infection to rule out. What I know is that I woke up yesterday feeling, for the first time in a week, better than the day before. Today, I feel even better. The skin lumps are getting smaller and there are no new ones. After having a fever of 102 on Saturday night, I don't have a fever at all today. The only change in my treatment has been stopping the chemotherapy temporarily and taking ganciclovir, the anti-viral to treat the CMV. Clinically, it seems to me that the answer is that the Lo was indeed causing all the problems.

This hospital stay was pretty miserable. I'm not sure if I just chose a bad weekend, but I was not impressed with being an inpatient at UNC. Some high(low?)lights included:

* Being told over the phone on Saturday night by the intern on call who had never met me or reviewed my records that the chest CT had turned up a new lesion on the right lobe of my lung that the doctors were concerned about. This meant that Leighton and I became more than a little worried (despite gut feelings to the contrary) and spent a fair amount of time trying to talk each other down from immediately beginning to plan for another cancer journey. Turns out, I found out in the morning, the lesion is a small 4mm nodule that has always been there and has always been PET negative (ie not cancer).
* At 1am, being stuck 3 different times by Nurse Karen, who decided on the 4th time that it was good enough, turned on the ganciclovir drip, and left the room. A burning, aching sensation immediately started and got worse so I turned on the light and saw that my arm had ballooned up to look like I had a few golf balls under my skin. I got out of bed, turned off the pump and pressed the call button. Nurse Karen sashayed in a few minutes later, told me my arm would go down and said she was going to text page the doctor that I needed a central line because my veins were "no good".
* The medical student on my team telling me, when I asked for a printout of my labs, that he wasn't sure he could do that because of the HIPAA privacy laws. He didn't seem to think it was ludicrous that he would have more right to my records than I did, but eventually came back with my labs, asking me not to tell anyone he had done it, so that no one would get him for violating HIPAA. Apparently, HIPAA is to protect us from ourselves.

So that's all I've got for now. Thank you all for your encouraging messages that entertained me (well...America's Next Top Model helped too -- it's so bad it's good) and buoyed my spirits. I think I am well on the way to being back at it and, as one of you wise ones put it, kicking the Lo out the doh!

Much love,
Zpora