It’s been a busy two weeks since my last update! First of all, thank you to everyone who contributed to my countdown! With a few last minute submissions, I have enough to open two each day during my transplant prep week plus the 100 days that follow. My friends are putting it together as I write this and I can’t wait to have the bright paper chain decorating my hospital room! I promise I have not peeked (they wouldn’t let me on that side of the room), but it was great to hang out and see it come together before they move this week to start work and grad school. I can’t say I’m looking forward to transplant, but I’m absolutely looking forward to reading all of these messages! I started my second block of chemo on July 15th. My counts were pretty low, so they decided to hold off on one of the medicines until Monday. I finally had my PT evaluation at Hopkins and I was pleasantly surprised to see that I hadn’t lost too much of the leg strength I’d been working on at Drexel, even with a month off. My physical therapist works with a lot of oncology patients and knows some of the side effects of certain medications, so she noticed some issues I didn’t even realize I had. Since we are focusing on some other things, I also started going to the community center gym to keep up my leg exercises from Drexel. Over the weekend, I went to the movies and invited some friends over on Sunday for a belated birthday celebration because I was finally feeling better. I went shopping in the morning for candy for the castle cake and piñata. I was pretty tired from the steroid insomnia and was hoping to take a nap, but three of my friends from school showed up and completely surprised me. It will never cease to amaze me how good my friends are at surprises - they had gotten my mom’s number from one of my friends from home and planned out the whole thing. They helped me build my taco piñata, which was actually their idea back when I thought I’d be celebrating my birthday in Philly. They had to leave before the rest of my friends came over, but the piñata turned out great, and everyone got a good laugh when we broke it and they noticed I had mixed mini bottles of rum and tequila in with the candy. We also made s’mores, played with sparklers, and constructed a castle cake. It’s been a few years since we made a castle cake for my birthday so it was fun to bring back the tradition. You’re never too old for a castle cake! On Monday, I went back to Hopkins for bloodwork to see if my counts were high enough to start the other chemo pills. Everything looked great so after waiting forever to pick up my prescription, we headed to Pennsylvania to visit my uncle. It was really nice to see him and some of our other extended family. We also stopped in Philadelphia to get some more of my stuff from my apartment. It was nice to grab some of the clothes and shoes that I didn’t have space for on the bus a few weeks ago, and I was also happy to see my roommate’s kitten, who kept trying to climb in my bags. After we came home later that week, my grandparents and another uncle came to visit. On Thursday, my friends and I spent the evening on the Magothy River which was just the relaxing night I needed before a weekend inpatient for more methotrexate. It was a beautiful night with an almost full moon, and the water was really warm. I got quite a few bug bites, but for some reason they didn’t show up for almost 36 hours. I guess my immune system is just confused. The next morning, I had a PT appointment followed by a long wait in clinic for my spinal tap. As I was waking up, one of my friends came to say hi because he was also in clinic. They started fluids to make sure I was hydrated enough and my body’s PH was high enough for the methotrexate. It seemed like the day could have been much more efficient, but eventually I headed to the inpatient side. The 24 hour methotrexate infusion is supposed to start within 6 hours of the spinal tap, and it was closer this time but still not quite there. The weekend was pretty uneventful. A few friends came to visit and I played a lot of cards and a new dice game I got for my birthday. I walked a lot of laps, especially in the evenings when there were a lot of people out in the halls to make walking in circles more interesting. There has been a lot of turnover in the inpatient nursing staff. A few of my favorites are still around, but there were a lot of new faces too. Last time, I was allowed to leave on Monday, but this time, my level wasn’t low enough. At one point, it went up from 0.4 to 1, which confused everyone because obviously my body can’t make chemo. On Tuesday, I woke up with cramps and diarrhea, just like the Tuesday after my last methotrexate, only this time I was still in the hospital with terrible toilet paper. The day before, I was obviously not happy to spend another day in the hospital but I was hoping the extra fluids would help my side effects overall. When the doctors came around on Tuesday, I told them I was ready to be home with good toilet paper and my heating pad. The instant hot packs just aren’t the same and trying to pee in the hat for them to keep track of Is and Os (intake and output) while simultaneously puking and having diarrhea was just not a good time. Luckily, my level was low enough that they were comfortable sending me home with fluids later that afternoon. My anti-nausea meds clearly weren’t working, so my nurse asked if I wanted to try some Benadryl. I wasn’t sure that it would help, but it turns out to have been a miracle drug. My cramps almost completely stopped and I hardly had any more diarrhea for the rest of the day. I have no idea why it worked, but I’ve been taking Benadryl all week and have felt a million times better than after the last methotrexate! I think it was some combination of more fluids, more leucovorin to protect me from the methotrexate, and the Benadryl, but it worked wonders. I still got some mouth sores, but they aren’t all down my throat so I can swallow some food and pills. I need to stick to soft foods and small bites though because I can’t open my mouth very wide. You know it’s bad when I turned down tacos because I didn’t think they would fit in my mouth. I’ve had some cramps and diarrhea throughout the week, but absolutely nothing compared to last time which was a huge relief. I was able to eat mostly normal meals and leave the house to run errands because I wasn’t tied to my heating pad. It was also nice that it wasn’t unbearable to talk above a whisper. I realized last week that the transplant timeline in my head was not how it was actually going to play out. I had another bone marrow aspiration scheduled for today (the 29th), and I wouldn’t get the results until Tuesday of next week. All summer, I thought I wouldn’t be able to go to camp, but with that timing, it seemed like I should be able to go for at least half the week. I started bothering my doctors and they agreed that I should be able to go for at least part of it, but then I realized that my methotrexate side effects might pose a problem. Last time, Friday through Sunday were the worst days, and that would be the start of camp. Luckily, the side effects have been tolerable and I should be able to stay the whole time! My bone marrow test got postponed until August 8th to give the chemo a little more time to work and drop my counts, so I won’t even be sitting at camp anxiously awaiting results. Once I get the test results, it will be full speed ahead to transplant if I’m MRD negative. While I’m at camp, my brother will have some tests to confirm that he is a good choice for my donor, and after camp I’ll get all of the organ function tests to make sure my body can handle the prep regimen they have planned. My tentative new birthday (transplant day) is August 25th! That might change, but it’s nice to have some idea of the plan. My hair has been thinning a little from the chemo, but I have so much hair that you’d never know if it wasn’t all over my shirt. I’ve managed to stay pretty busy, so other than one afternoon when I felt completely useless and unproductive, I’m feeling okay about dropping my classes. I don’t think I can graduate on time now, but one of my friends pointed out that she did the same thing and her world didn’t fall apart and she got to enjoy college a little bit longer. Considering how little time I’ve actually spent at Drexel, that’s a huge perk. I’m really looking forward to spending the next week at camp and enjoying my last little bit of summer before I’m stuck in Baltimore for 100 days! Thanks for the continued support, messages, and cat photos! I love you all!
14 Comments
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8/1/2016 06:00:56 pm
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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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