I’ve got lots of exciting updates tonight, the most exciting of which is that I’m typing this from my apartment! That’s right, I said goodbye to Hotel Hopkins yesterday afternoon…until clinic this afternoon but that was a temporary visit! Christmas in the Hospital wasn’t as bad as it sounds. My nurse for Christmas Eve night into Christmas morning brought me a present which was incredibly sweet and the floor was pretty empty (I think there were only about six patients, which is lucky for everyone else!). This meant a lot of the nurses got called off, and those who were left had a lot of holiday spirit. My mom brought my siblings in on Christmas morning and we all opened our presents. We spent the rest of the day playing with all of the games we got. A family favorite so far has been Colorku, which is Sudoku but instead of using nine numbers, there are nine different colored balls. The game came with 105 puzzles to solve and we’ve done at least half of them (I’ve been keeping track) and you can also convert any normal Sudoku puzzle to colors when we run out. We also played Are You Smarter Than A Fifth Grader, and no, I am not. It was a pretty good Christmas for everyone, and my new coat, jacket, sweatshirt, and long sleeved shirts were definitely well-timed right before the snowstorm yesterday! There was a Christmas dinner served down in one of the lobbies, which tasted like cardboard to me but I force fed myself the turkey for protein. The entire week of Christmas, the doctors were trying to get me out of there. They changed the “you need to have an ANC of 500 for three days in a row” to “you need to get to 500” and then when I was at 440, one doctor said I needed to “round to 500.” When rounding to the nearest 500, 440 rounds to 500, and so does the next day’s disappointingly low 360, but the doctors didn’t quite buy that so I stayed in Hotel Hopkins a few more days. I really didn’t mind being there except that every day the doctors would come in on rounds in the morning and say “maybe tomorrow” or sometimes even “plan on tomorrow.” There were a few days where I was so anxious about my labs that I wouldn’t sleep between when they drew the blood around midnight and came in with the results (usually around 5am). My counts kept dropping, which I think wasn’t helped by the lack of sleep, and it was pretty disappointing. The week between Christmas and New Years was pretty uneventful. A lot of my friends are home from college for winter break so I had lots of visitors and I slowly worked my way up to walking about two miles a day again. Some days I was really tired and could only walk about 10 laps at a time instead of 15+, but anything is better than sitting in bed all day! I even got some of the resident doctors to walk with me. I was disconnected from my pole all day except for 20 minutes twice a day for my antibiotics. This meant I had to drink two liters a day, which we kept track of by writing tally marks on each of my cups. I didn’t even get fluids overnight, which meant I’d wake up a little bit dehydrated and my weight would be low. The nurses on my team know about my battles with the nutrition lady, so they’d give me a chance to eat and drink a little before getting my weight. One day, I had a nurse who I had never had before who came in with the scale right after I woke up. I asked if we could wait to do my weight and she said no, the morning weight is the most accurate so she was going to do it then. While she wasn’t paying attention, I put my jacket and hat on and snuck my phone into my pocket. These things really didn’t make much difference but I was annoyed and needed all the help I could get. Sure enough, my weight was low and the nutrition lady came in a little bit later. She was nicer than I expected and didn’t suggest any nutrition alternatives, just told me to focus on eating and drinking more Ensure. Usually I only drink half at a time but I tried drinking a whole one…and threw it up. At that point I decided that nobody else could really tell me what worked for me and I was just going to keep doing my best and getting weighed later in the day. The only medically eventful thing about my week was that I got a rash on my hands. A rash can be a sign of GvH so they watched it closely. It spread from my hands up my forearms and was eventually on my shoulders too. The only other place we noticed it was the bottom of my feet. It was incredibly itchy and would show up in the afternoon and get worse through the evening. I needed anti-itch medicine to go to sleep because otherwise I couldn’t stop scratching long enough to fall asleep. During the night, it would disappear. The doctors doing rounds in the morning would always look for it and never saw anything but by the time the night resident stopped by each evening, it was there. GvH doesn’t usually disappear like that, and it got a lot better yesterday and today, but it was definitely interesting. My original goal had been to get out of the hospital by New Years Eve so that we could watch the fireworks from the rooftop deck at the apartment. However, my ANC was in the 300s that day I wasn’t going anywhere. This ended up being fine with me because it meant we didn’t have New Years dinner as a family and I wasn’t forced to eat any sauerkraut. Also, the view from the 11th floor was absolutely fantastic – we could see multiple fireworks shows. The whole family came in for the fireworks and we hung out and played games while we waited, including air hockey (my nurse took a turn too). Also, one of my doctors came in that afternoon with two bottles of sparkling grape juice and plastic champagne flutes so we had the appropriate midnight toast. She’s also the one who brought the burgers for Labor Day and lent me one of my many fake trees, so all of the holidays have been well celebrated. My nurse came in a little before midnight, pretending she was there for vitals, and at midnight she threw confetti EVERYWHERE. Even after cleaning it up we’ve been finding it all over the place. Some has even made it to the apartment. I think this nurse really enjoys making paper confetti, because a few days earlier she and another nurse threw confetti on one of my friends who was leaving after a lengthy stay. Either way, it was a lot of fun, and there definitely would not have been confetti at the apartment. New Years Day was mostly spent sleeping after I stayed up until 1am. I slept more than usual though, which made me wonder if my counts were going up. The day before my ANC was at 440 a week earlier, I slept for at least 18 hours of the previous day. Three of my best friends came to visit and before they left, they came up with a cheer. When the resident came in, we all tried to spell out ANC because everyone always says to do the ANC dance. Since my mom mentioned the cheer in her email update and hinted that I put it on here: C-E-L-L-S you can do it, you’re the best! K-A-R-E-N go to sleep and count again R-O-S-E Rose, hit 500 out she goes! I went to sleep with low expectations but I was hopeful that the sleep had been a good sign. I had a nurse I’d never had before so when I woke up I found my counts sheet with a big 680 colored on the side. I was absolutely shocked – it went up a full 300 points in 24 hours and my nurse hadn’t woken me up to tell me! I know for sure that some of the nurses on my team would’ve been so excited that they would’ve woken me up. The nurses that have me consistently were getting competitive about my ANC, and we would jokingly blame them if my ANC dropped a lot. For example, one of my nurses was sad that I was so close to leaving (happy for me, but she knew she’d miss me) and then my ANC dropped that night. Coincidence? We weren’t so sure. Since my ANC jumped up to 680, we didn’t want to get too excited and start packing in case there was some catch. Until the nurse came in for vitals and told me I was getting discharged, we weren’t counting on anything. Packing took a while and was really exhausting but my dad, boyfriend, and aunt arrived just in time to help move stuff out and transport it all to the apartment. Eventually, everyone headed to the apartment except for me and my boyfriend. Thanks to hospital time, we didn’t get the actual discharge papers until a little after noon, but that gave my nurse enough time to gather a crowd to sing Happy End of Transplant to me (think the tune of Happy Birthday). Walking out of the hospital was the strangest feeling. I really can’t even describe it to anyone who hasn’t been a patient for at least a month before because I can’t think of anything to compare it to. I’ve walked all around the hospital during my stay, but walking across the bridge to the parking garage was so exciting. My boyfriend probably thought I was crazy, but I’m sure that’s not the first time. Being in a car felt strange. Walking outside to get in the apartment felt strange. But it was all wonderful! Everyone thought I’d be ready for a nap, and I probably would have been if I wasn’t so excited. Instead, I was ready to go grocery shopping. Then my dad and I showed everyone else around the apartment building and the Believe in Tomorrow house at Hopkins, where we had stopped by to get tickets for the aquarium. It was snowing while we were walking around outside and I could not have been happier! After my parents headed home, we decided to order Outback takeout instead of eating any of the food we had just bought. We walked a few blocks to Outback in the middle of the snowstorm and came back to eat our food. One of the few things I can taste right now is barbeque sauce, so I got chicken and ribs. We also got a little loaf of the bread and I ate all of my food and most of the bread! I was pretty surprised. I usually eat a lot more as soon as I leave the hospital, but that was definitely significantly more than I’ve eaten in a while and I felt fine after. By 7:30, I was falling asleep playing Colorku. Needless to say, it was an early night. It took a while to fall asleep in a new bed with all the snowplows going by outside but I did eventually and woke up feeling great this morning! After breakfast, we headed to the aquarium! It was pretty empty, I guess because all of the schools were closed from the snow so there weren’t any field trips. When I got tired, we’d watch the dolphins for a little bit so we could sit down but I did pretty well! After a few hours, we headed back to the apartment for lunch before we had to head to clinic. My appointment was at 3 and I expected it to be pretty quick but we were actually there until about six. The doctor wanted to go over all the rules of freedom – a lot of dietary restrictions, most of which I’m used to by now, and what signs of Graft vs. Host to look for/when to come to clinic or call the doctor on call. When she said we were going to go over the guidelines, I said “I hope the aquarium is allowed because I already did that.” As it turns out, they really don’t want me in public places like that for about five more months. Oops. I’ll avoid concerts and stuff, but I don’t think I’m capable of living in a cool place like Canton and not exploring some of the shops and other cool places around here. Plus, I have tickets to so many fun places at my fingertips. I might be bending their guidelines, but my mask and hand sanitizer are my friends and they haven’t let me down yet. Next week will be day +30, which means a bone marrow extraction to see if my bone marrow is all my sister’s like they want it to be. I don’t know what happens if it isn’t, there are some questions not worth asking. Also, since my platelet count is above 50, I will be starting weekly spinal taps (this lasts for five weeks) to put a little chemo in my spinal fluid. This is just a precautionary thing, since chemo given through the bloodstream doesn’t really get to the spinal fluid and chemo in the spinal fluid doesn’t really affect the blood. They haven’t seen any cancer cells in my spinal fluid but they like to be sure and that’s fine with me! I don’t want to do this again. Most transplant patients go to clinic three days a week (MWF) but since they don’t have time to do my procedures on Monday, I’m just going on Tuesday and Friday next week unless something comes up. My nurse said she’s never seen anyone go straight to two visits a week – I guess I’m exceeding expectations again! I’m hoping the good progress continues and I don’t get any fevers or other infections. Even though my ANC is going up, it’s kind of a false sense of immunity. All of my vaccinations got wiped, and I can’t get them again until a year post-transplant (I can already picture Drexel having a cow when I can’t prove my immunizations when I go back to school). ANC also is not the only indicator of a good immune system, so I’ll be pretty susceptible to infections for a while. As always, visitors are welcomed and appreciated, but if you’ve been in large crowds or near sick people within the past few days, you may be carrying germs that won’t get you sick but could easily get me a fever which lands me back at Hotel Hopkins for at least 48 hours. While I (unfortunately) will have a number of friends on the floor during the upcoming months, I’d rather visit them as an outpatient. Anyway, if you’d like to stop by, send me a text or facebook message so I know to expect you and can give you directions! Thank you to everyone for your thoughts, prayers, cards, gifts, food, visits, and ANC dances! They’ve definitely been working! I love you all!
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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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