After awhile Bryan suggested I take my temperature and after the kids were all in bed, I did. It was 102.4. I took it repeatedly, in both ears over and over and the result was the same. Then I tried my forehead thermometer and that kept coming back at 97. I took a cool shower in hopes that my temp was just elevated because I had just woken up. After my shower I took my ear temp again and it was 103.8. I waited a little and tried again and it was back to 102.4. I searched the house for the mouth thermometer and when I finally found it, it said 102.2. I knew I had to call the doctor but I didn't want to. I knew what she would tell me.
She asked how high my fever was and told me it was too high. I told her about my other symptoms and she told me to go to the ER and she would call ahead and let them know I was on my way. Bryan got dressed and I called my sister to come watch the girls until my parents could come. Then I called my mom and asked her to come. I was in tears, I didn't want to go. I knew it would be a long trip and that I might not be released that day.
I got to the ER and they took my home medication information and put me in a room. The ER doctor came to see me and told me they were going to pump me with fluids and antibiotics, take some blood and urine and possibly admit me. Things were rolling so fast, they did an EKG, took a ton of blood, I peed in their cup, they hooked me up to the fluids and antibiotics. They did a chest x-ray, and then another. They noted that my heart rate was higher than it should be. And then the waiting began.
I don't know how long we waited, but there was a new doctor on now. He came in and told me that my labs are showing my body has an infection but they don't know where it's coming from because I don't have any other symptoms (rashes, pains, etc.). He said they were going to give me more antibiotics and more fluids and admit me. And there it was.
After much more waiting (we got there at 9:30pm and they moved me to a room at 3:30am) I was finally moved to a room. It was a private room. I was exhausted, but I had to go thru another hour of questions and being hooked up to EKG monitoring and more fluids and antibiotics. During this whole time I kept getting very hot and sweaty, and then teeth-chattering cold.
I was put on "Neutropenic Precautions" which meant no fresh fruits for veggies, no flowers, and any visitors with cold symptoms had to wear a mask.
Bryan left around 4:30 to relieve my parents and I tried to go to sleep for awhile. Someone across the hall was throwing up all night long so sleep wasn't something I would be getting any of.
The next day (Wednesday) I was so hot that I got up and leaned myself over the air conditioning vent. The nurse brought me some ice packs which I immediately put on my neck and head. All day I went from hot to cold and I'm downplaying it by saying it like that. Bryan came and sat with me and my sister and mom took off work. Sacha watched the girls in the morning and my mom visited me and then my mom went to my house and they brought the girls to visit me. I could tell the girls were upset by it all and that made me more upset. We hung up the butterflies they made me.
My doctor came and told me that they only thing they haven't tested me for was swine flu. I think she was joking. She told me my PT/INR was low and so I would have to have shots of Arixtra in my belly until my level came up. She told me my counts were low so I would have to have Neupogen shots in my belly to boost those. She told me that she consulted an Infectious Disease doctor to try to figure out what the infection is. And she told me I was stuck there.
Sometime during the day I lost my appetite. I tried to eat lunch and dinner, but just wasn't feeling it. My friend Kristi came to visit with gifts and a card from my unit. Sometime during her stay I got those teeth-chattering chills. After she left she texted me to ask the nurse to take my temperature...it was 103.1. This confirmed what I already thought - the chills meant my fever was high and the sweats meant it was low. Bryan waited pretty long, but I wanted him to spend some time with the girls before they went to bed so he left around 7pm. They made me put cold wash clothes on my chest and head, which was horrible considering how cold I was.
Shortly after, the Infectious Disease doctor came and checked me out. He looked everywhere and felt everywhere and asked about everywhere I had been. He had already been thru my chart and test results. He told me that it could just be a virus that my body couldn't fight due to low blood counts. He told me it could be that my port was infected and that the blood cultures would show that, but so far the cultures were negative. Then he said there was a very slight chance it was the swine flu and that he was going to test for that, and that test takes two days to come back.
I was devastated - two days brings me to Friday and my family is coming Friday. I thought I'd be stuck there all weekend.
Being tested for the swine flu meant I had to be put into isolation. Anyone entering my room had to wear goggles, a mask that resembled a duck bill, a gown, and rubber gloves, and my room door had to stay closed at all times. To do this test, the nurse took a wire swab and stuck it up my nose and it wrapped down into my throat. It was torture and it sent me into a crying fit. I cried for a long time - I was lonely, I missed my kids, and I wanted to go home.
That night they alternated Tylenol and ibuprofen and my fever finally broke, going down to 98.2 but I was sweating profusely. My sheets were soaked and around 4:30am I asked my nurse if I could have new sheets. She changed my sheets and was excited that my fever broke and my heart rate went down. I liked her a lot, she was the only nurse I liked and of course she worked the night shift.
By morning the fever had returned along with the hot and cold flashes. It was another long day of crappy nurses, crappier nursing assistants, and emptying my own urine. That's right, I had to pee in a container that sat in the toilet - easy to do. The nursing assistants were supposed to empty this and record how much "output" I had. I ended up writing it all down and emptying it myself most of the day and night. On this day I was getting really frustrated because I couldn't see the girls because of the isolation and because someone was supposed to come to my room every hour and it was more like every 2 1/2 hours. The doctors rounded late and I was homesick.
The Infectious Disease doctor came by and told me the cultures were still negative but the swine flu test wasn't back yet. Then he mentioned being able to go home if we can get the fever gone and the test was negative. This gave me some hope of being out of there Friday. Then the doctor covering for my doctor came by and checked me out. We asked him the chances of my going home tomorrow (Friday) and he said pretty low, but possibly Saturday. I was happy to hear it, but not feeling like it was possible because my fever just wouldn't quit.
My parents were keeping the kids overnight and Bryan left a little after 8pm to go kiss them before he went home.
I cried even harder that night. I was really lonely, I couldn't sleep, I was too hot and too cold and had been sweating constantly for over 24 hours. I really missed my kids and I really just wanted to be better. I repeated begged God to take away this infection and make me well.
In the middle of the night I woke up, the fever was back, and I felt a little tightness in my chest. My pulse ox was 98, which is good so I think it might have been anxiety. The nurse gave me some Tylenol. She was concerned about my heart rate - every time I got up to go to the bathroom it would go up into the 150's. Both doctors had told me the high heart rate was due to the fever.
In the morning my fever was gone and my sheets were drenched with sweat again. I asked the nursing assistant if I could have new sheets and she gladly changed my bed for me. I felt pretty good - just a slight headache but it was the first day I felt comfortable with my body temperature. My appetite was even back.
Sometime after 11am, the nursing assistant informed me that I was no longer in isolation - so no swine flu. And then around 3:00, like an angel the doctor covering for my doc floated in and asked me if I wanted to go home. By 4:00 I was walking out the door, so happy and excited to see my kids.
He told me if my fever comes back and I feel o.k., to track it - how high, the time, etc. He said to come to my chemo appointment Monday and he wrote orders for them to do a bunch of tests, check my vitals, and then call him to make sure I can have it.
I checked my temp around 5:20pm and it was 100. I took some Tylenol and it went away. I wrote it down. I'm hoping to wake up feeling like a new woman tomorrow, although I'm worried I may have to go back. All the antibiotics and flu treatments have my tummy messed up and I'm still feeling a little hot and a little crappy. I was feeling so good this morning and even in the early afternoon.
I'm going to skip the 4th of July parade to avoid the large crowd of germs, but I am going to go to my aunts to spend time with my family. I pray I'll be feeling good enough.
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