More about the Hospital Stay

I was glad Juanita had spent the night at the hospital with me and could meet my oncologist. He said the fevers I had could be from an infection, medication, or the leukemia. They hadn't found any infection yet, but the cultures take 48 hours. He said that I might be in the accelerated phase of CML (the 2nd phase), or I might still be in the chronic phase (the 1st phase), but I wasn't in the blast phase (the 3rd phase, which is treated more like acute leukemia and is very bad). He wanted me to stay in the hospital another day since I was still having fevers. Juanita asked him about work, and he said I should take six weeks off. He said that if I did work at all, I should avoid anything with urgent deadlines. Um, yeah, my profession is driven by deadlines.

After he left, Juanita and I looked at the menu and ordered breakfast. I wasn't very hungry, but I really needed some coffee. I was able to eat 1/2 slice of french toast and a little bit of fruit. I gave the rest to Juanita. After eating and having coffee, I felt pretty good in spite of getting very little sleep. I thought the blood transfusion must have worked to boost my energy. Juanita and I talked and watched TV.  We ordered lunch, but I couldn't eat. I choked down a couple bites, but I was gagging just to get that much down. I got back in bed under some blankets because I was cold again. Well, you guessed it. My temp dropped below normal, then starting climbing. I had to have more blood cultures every time it went over 101.5, so I couldn't have tylenol until we waited to see if it would get that high. Letting it get that high meant that I got sick and starting throwing up again.

After church, Roger, Rachel, and Katie came to the hospital along with Randy and Juanita's grandson, Kayden. My friend Angie came in shortly behind them. After Angie left, Juanita, Randy, and Kayden went to the cafeteria to give us some family time.  Rebekah wasn't there because she had left at 6:00 am to go to Kentucky on a mission trip. By this time, I was tired again, and I wished the kids could have come in the morning when I had more energy. They had never seen me very sick, and I knew it scared them to see me like this. I found out later that they started crying when they left my room.

Randy and Juanita took the kids home for supper, and Juanita made some apple pies.  Roger stayed and spent the night at the hospital with me. Around bedtime, I got chills then a fever again.  By this time, I was recognizing the cycle, and I was determined to get tylenol before I starting throwing up. I had a thermometer in my room, so I was checking my temp every 15 minutes. As soon as I developed a fever, I called the nurse, and then as soon as it got over 101.5, I called the nurse again to ask for tylenol. I was nauseous, but I managed to keep the tylenol down. As soon as the fever came down, the nausea subsided.

Since I didn't have an IV in my arm the 2nd night, I was able to sleep on my stomach and get comfortable. Just as I started drifting off to sleep, the nursing assistant came in to check my vitals. Then when I got comfortable again, a lab tech came in to draw the blood for another set of cultures. Finally, I fell asleep until the nurse came in at 2 am to give me my antibiotic medicine, but fortunately, I was able to fall right back to sleep until about 6:30 am.

Monday morning, I felt great after having a good night's sleep. The nurse covered the IV needle that was still in my arm so I could take a shower, and she brought me a clean gown. When my oncologist came in, he gave me the choice of having year-old leftover hot dogs for the 4th of July holiday in the hospital or going home, since they hadn't found any evidence of infection. Of course, I picked going home. I told him that now that I was paying attention to my body, I recognized the cycle of getting cold then hot when I spiked a fever, and I thought I'd been having the fevers for months, but I never took my temp because I didn't realize I was having fevers. He agreed that it was quite possible, in which case it was the leukemia causing the fevers.

As soon as the discharge paperwork was completed, we left the hospital. The kids were with friends, so it was just Roger and me at home. I joked, "Oh, so this is what we have to do to get the house to ourselves for a few hours - get leukemia."  By the time we got home, I was ready for a nap.

Now that I was paying attention to my body instead of trying to push through, I realized the magnitude of what I'd been fighting for so long. I had a couple of good hours in the morning, but by lunch time or early afternoon, a "fog" rolled in over my brain, I was tired, and I couldn't think. In the middle of a sentence, I'd completely forget what I was talking about. It's like trying to walk through sludge. I had been using caffeine to get through, but that wasn't working so well anymore. We'd tried medication for our daughter who has ADHD, but the one that worked upset her stomach and the other two didn't work for her. The bottles were still sitting in the medicine cabinet and I considered trying them to see if they'd help. I even mentioned it to Roger shortly before I was diagnosed, and he told not to try them because who knows how they'd affect me.

After my hospital stay, I began napping daily, sometimes twice. I am a person who normally can't fall asleep during the day unless I am utterly exhausted, so it surprised me that I could fall asleep every day. On Thursday, July 14, I had a fantastic day.  I didn't nap at all and I didn't get brain fog.  My hemoglobin that day was 11, which is low, but the highest reading I'd had since this journey began. The following day, I also didn't nap and had a great day.

My new medication, a targeted CML drug that my oncologist describes as a biological agent rather than a chemo drug, arrived on Tuesday, July 7 via FedEx.  Roger went to the door, and in addition to the medication, he had a box from ProFlowers in his hands.  We opened the box to find a dozen roses in various colors. I looked for the card and was shocked. The flowers were from a group of women that I only know online. They'd gotten together the Saturday before, and I really wanted to go, but was not up to it. Hopefully, they will have another get together soon and I'll be able to go.

By Saturday, I began feeling tired and foggy again. My oncologist had told me that the new medication would kill the abnormal cells first, then begin creating an environment where normal cells can be produced in the correct proportions. He said I might get more anemic again in the meantime, but maybe not.  At this week's appointment, my hemoglobin was down to 10.4, so that's apparently why I started feeling tired and sluggish again. I've started needing naps again, and concentration and mental exertion are difficult. The good news is that my white blood cells are down to 17k! My doctor is on vacation, but the nurse practitioner was very happy with that number. My neutrophils are still too high as a percentage of white blood cells, but that's to be expected for awhile longer.