Bles 2 (or a weekend away continued)

I finally was brought up by someone in the ER once I asked if I could just walk myself upstairs. After waiting an hour for an orderly and becoming increasingly aware of how nuts the ER was it seemed like getting me out of the ER and freeing up the bed would be good. I also was happy to get settled if I was spending what I thought would be a day or two.

The wing I was in is a clean floor where you need to go through double doors that airlock (you can't open the inner doors until the outer doors are closed and sealed) and taken to my room. It was a lovely room - bigger than I expected and private (no immune system means no roommates). I had my temperature taken and then vitals were taken every 4 hours - and blood was drawn at midnight and I was given more antibiotics at 3:30. I didn't really sleep much Friday night. Everyone was very nice and good at what they did. Saturday I still had no fever during the day and was still wondering if we had overreacted by admitting me. My friend Taleen was in town from Massachusetts and came to visit me as did Melissa, Bosoxfox. I had thought making people who were in town come to my house and go eat somewhere within a 2 block radius was sad, but having people from out of town come to visit in the hospital seemed like a new low in my invalid status, especially when I still felt pretty good - or at least not bad. I was mainly feeling tired and somewhat concerned about whether I would be fed.

I hadn't gotten in the system since I arrived so late, no dinner - at breakfast I was served the food ordered by the previous patient but then the person who delivered the food never came back to take my order. I hadn't paid attention at lunch since Taleen and BoSoxFox had brought me food and drink but by 3:30 it occurred to me I might not get dinner. BoSoxFox had left at this point (she had come early and spent much of the day in the lovely Bles 2). But Taleen assured me she'd get me food before leaving if they hadn't confirmed my meal. They ended up calling at about 4. By this time I was actually starting to feel bad, at the 4pm vital reading I was starting to get a fever, not beyond the 100.4 (or 38 degrees centigrade) that seemed like the magic number but definitely on its way up. Taleen left a little before 5, food came right after 5 and after eating the food (not terrible for institutional food but that might have been the fever and hunger) was basically ready for bed. After the 7pm dose of antibiotics when they did my 8pm reading I was officially feverish and suffering from neutropenic fever. There really should be an organ chord or some other way to emphasize how things then changed. Doctors were called, blood was drawn and a flurry of activity commenced including having a chest x-ray done in my bed. Yes they have portable x-ray machines and I got to have one. That was better than the futile attempt to get blood out of me from my veins while I was weak, feverish and laying down. After looking at various veins and trying twice in my hand I decided the mediport blood sample was probably sufficient. The second time the nurse actually had the needle in the vein and no blood was entering - not exactly sure what that meant in terms of my blood flow but given the number of negative blood cultures they had taken I decided one sample would have to do. This is also the point where it occurred to me I could say no. After the tests (which all came back negative) - they gave me some tylenol and I went to bed. Not sure if it was the ativan, the fever or just general exhaustion but I slept an amazing amount and pretty well given the interruptions and iv's that were attached at different points. Friday night I would have sworn there would be no way for me to sleep when I was actually hooked up and having something delivered to my mediport but Saturday night they would come in - change something and I'd go right back to sleep. The nurses mentioned patients sleeping through getting hooked up or having blood drawn but I never got to that point.

So going to the hospital did make sense - I was feverish again at 4am but was given more tylenol and was then fever free most of the day. This did mean that I had to accept I could be in the hospital longer than the day or two I thought. Sunday BoSoxFox went to my house and brought me more supplies and my friend Sue also came over. The docs said my levels were still low (80) but seemed poised to take off (they said this Saturday too). To not be neutropenic they needed to be over 1000. Sunday I felt okay during the day but then mid-afternoon my hips really started to hurt - I took this as a good sign that maybe my bone marrow was kicking in and making all sorts of new blood cells. Sue and Melissa left, I took an oxycodone and tried to focus on the positive potential causes of hip pain. Unfortunately, I ended up running a slight fever Sunday night during the antibiotic. Not sure if it was related to the antibiotic I think I'm allergic to, or my body working hard making white cells or the fact that I seemed to make a lot of them. My body once activated it seems produces a ton of cells. I went from 80 to 2800 in a little more than 24 hours. (They did my blood work at 5 in the morning after I blamed the antibiotic and wanted to move the timing of my antibiotics so the doctors might be around if my temperature spikes were caused by the antibiotic.) Sunday night I also refused to let them even try getting the second blood culture. In some ways the worst part of this and every doctors visit is the crap shoot and pain that accessing my veins seems to be. It always hurts and only seems to work half the time.

Monday I woke up feeling great - I knew I was no longer neutropenic but they had to wait for the blood work to come back. I think they were a little taken aback with how high my levels were- I effectively went from no immune system to high-normal in a day. Monday I walked laps (20 laps equalled a mile) an incredibly boring activity - where I always wondered if I was in the way. Rosanne came and visited and I ended up talking with the nurses and my med student a lot. I probably could have pushed for a late dismissal Monday night but thought it was reasonable for them to want to keep me overnight given that is when I seemed to have fever. Of course it seemed like we were all in agreement that I would be released the next morning. I didn't realize how long getting the paper work could be.

After an uneventful night where my biggest problem was getting someone to unhook me in the morning so I could take a shower (the night nurse assigned to me, also had other patients who needed much more care, including one who was receiving chemo). I was ready to be out of there by lunch. At 10:30 all the doctors had been by at least once and said I was ready to go and they were filling out my paper work. By 1 the intern had said I could call my ride and the paperwork was ready to go. The medical team then ended up busy in the ER - the medical student assigned to my case delivered the papers but they hadn't been signed. I ended up leaving after 3. They didn't the bed but I really don't understand how it could have taken so long given we were all in agreement the day before I would be ready to go.

In the end I should have pushed to be released Monday night - but I am now home, I got to sleep without blood being drawn or vitals taken every 4 hours. I did wake up in the night and kind of missed some of the beeping but mainly was a little sad when I woke up this morning and realized I had to get up and make my own breakfast. No bedside delivery at home. Now I am off to fill my prescriptions and check in in the office. (People have made some food I want to pick up - thank you Elaine, and I need to fax something off.) I will almost surely have a fairly mellow week.

After some discussion with my doctor it does look like I am going to have my final chemo. I just will end up getting some shots of the neupogen to hopefully avoid getting neutropenic next time.