On Friday, I came into clinic for a spinal tap and blood work. My ANC (the immune system number) was still 0 and they decided I’d probably need a blood transfusion when I came back on Monday. The spinal tap went much better than the first one (it didn’t take multiple tries OR multiple people) which was a relief. Boring is better. For spinal taps all I need is some Versed and I don’t remember a thing. I slept through the whole procedure and for an hour after before my mom somehow convinced me to get up so we could go home. The Versed hadn’t worn off yet which was unusual, and I don’t remember that conversation. Or getting to the car, or the drive home, or getting in my bed. I woke up hours later for dinner and was still exhausted.
At 11, when I was going to bed, my mom came back to my room to see if I needed anything and caught me adding another blanket to my bed. It wasn’t cold in my room. She asked if I had a fever and of course I didn’t want to have a fever but she got a thermometer. 100.9. I have to go to the ER for anything 100.3 or above. I insisted on another thermometer. 101.1. Let me tell you, going to the ER late at night does not sound fun. Going to the ER late at night when it means getting out of your own warm, comfy bed is even less fun. Boring Friday nights are better than Friday nights in the ER. However, by the time I got here, my fever was even higher, so it was definitely a necessary trip. Fevers are a big deal, especially with an ANC of 0, so I got every test out there to see what was causing the infection. Go pee in this cup, stick these swabs up your nose, time for a chest xray, we need blood from this arm and blood from both lines of your PICC! And so the adventure began. They couldn’t get blood from the white line of my PICC, and decided not to worry about it at the time but it was important later. While I was getting antibiotics, they have to do vitals every five minutes. My heart rate was so high from the fever and being anemic again that I was setting off alarms left and right. I’m still alive though so no worries. The antibiotics worked pretty quickly and by 5am when I was finally able to go upstairs to the oncology floor, my fever was gone! Considering I have to stay here for at least 48 hours fever-free, quickly getting rid of my fever was nice. I still have the cough that I’ve had for about a month now, but since it’s the beginning of RSV/flu season, I’m on droplet isolation because of it now. Not just the nurses but also anyone who comes into my room to bring food, clean, empty the trash, etc, has to wear a yellow gown and a mask. My trash cans fill up pretty quickly. I’m not allowed to leave the room and my parents have to wear masks when they do. If I have visitors that I don’t live with, they need masks, but I think they can skip the fashionable yellow gowns. Later that day, my nurse decided to get to the bottom of the white PICC line issue. She put some anti-clotting stuff called TPA in it, which I had 9 years ago in my port with no problems. This time, before it was even all in the line, I was nauseous, sweaty, coughing more than normal, and couldn’t feel my face. The entire thing was numb and I don’t think I have EVER been so terrified. My room was instantly the popular room, which I don’t think is ever a good thing in the hospital. Boring is better. My reaction started to fade after a few minutes and they ordered Tylenol and Benadryl for me. Nobody had ever seen an allergic reaction to TPA but my nurse took it out of my lines and added it to my allergy list. Tape and TPA, I’m such a strange patient. Between the Benadryl and my lack of sleep, I slept most of the afternoon. Even getting two units of blood wasn’t enough to really wake me up. Before the transfusion, my red blood count was so low that a lot of little kids would have been dizzy. I was tired but not dizzy, which surprised everyone. It’s amazing how my body got so used to being anemic all summer that it can deal with these things. Anyway, after a full night’s sleep last night, I feel great and my fever has stayed away! Now I’m just sitting here hoping that the rest of my stay is calm and boring!
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AuthorI’m Karen. I was originally diagnosed with Acute Lymphoblastic Leukemia (ALL) in August 2004 when I was 10 years old. When I was working on my college and scholarship application essays two years ago, I wrote about my journey. Although it was a rough few years, it became such an influential part of my life that I can’t, and wouldn’t want to, imagine my life without having had cancer. I called it the worst best thing that ever happened to me. Archives
April 2022
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