This week was another one of those weeks with a rough start but a good ending. Before my medical updates, I have a few site updates! I’ve added a few more pages for you to enjoy. First of all, there’s the photo gallery, which includes photos that I’ve taken and want to share but didn’t find a way to fit into my blog posts. Also, the cheesecake recipe is there. I know some of you have been waiting for that! In addition to the photos, I added a countdown page but I’ll explain that later in this post. My last update is adding a spot to put your email address in the questions/comments form so I can reply. I’ve gotten some awesome messages but realized I can’t reply to them. Oops. Live and learn. On Monday, I headed to clinic with my bags packed, ready to be admitted. Well, as ready as I was going to get. After 3 weeks at home with no chemo, I was feeling great and the hospital was the last place I wanted to be. As I was waiting for my appointment, my mom mentioned that I might have a spinal tap that day. As soon as I saw my nurse, I asked her and she confirmed that yes, I was scheduled for a spinal tap. Not that it really mattered whether I knew or not, it was happening either way, but I generally prefer a little more warning. Oh well. The doctor scheduled to do my procedure was in the operating room for another procedure, so my mom and I occupied ourselves by refilling the band-aid books. As a thank-you, I got to keep a box of fun band-aids, which was probably more exciting than it should have been but I don’t remember ever seeing anything but tan brown band-aids in my house. I got some Versed before my spinal tap as always. They didn’t give it to me as early as usual, so I kind of remember the spinal tap. Luckily it was quick and pretty painless, not something I wish I could forget or anything. Unfortunately, the Versed kicked in after and I don’t remember the rest of the day. After a spinal tap, I have to lay flat for a while to prevent spinal headaches, but eventually I went over to my inpatient room, not that I remember any of this happening. They started the high-dose Methotrexate (the reason I was inpatient), which runs for 24 hours. That evening, I watched some of The Voice with my mom but mostly I just remember sleeping. I knew I’d be in the hospital until my methotrexate level was low enough. Getting a good night’s sleep in the hospital is even more impossible when trying to clear methotrexate than it normally is. I was getting a ton of fluids to help clear the poison so I was awake to pee every two hours. The doctors came in on Tuesday morning and told me that walking laps and pooping were also helpful in getting the desired low level. One of the doctors had done my spinal tap (and I knew her from the first time) but the other one didn’t look familiar at all. Turns out I had met her the night before and didn’t remember a thing…darn Versed making things awkward. They informed me that lots of doctors were watching my levels very closely due to a horrible experience I had with methotrexate last time. I got it every few weeks during one of the stages of my 2.5 year treatment and usually I was fine, but one week my body wouldn’t clear it. I was hallucinating and unaware of where I was and I had to take an experimental medicine from NIH that was rushed to me in the middle of the night. Not that I remember any of that, but pretty much everyone else in pediatric oncology does. I’m special… I walked lots of laps but later I had an awful headache. I tried taking Tylenol but it didn’t help at all so I tried going to sleep but I felt too tense and restless. I finally asked my mom for a back massage to help me relax and we discovered that my entire back was tense and knotted. Once I relaxed a bit, my head felt a little better, but I still didn’t want to look at any screens or light. On Wednesday, after as good a night’s sleep as I could expect, my headache was better but not entirely gone. My right big toe was also growing increasingly red because the nail was starting to press against the skin. One of my doctors (the only one there that I’ve met and don’t really like), was worried it was ingrown and getting infected so she started me on some antibiotics and recommended soaking my foot. Throughout the afternoon, my headache got worse. Another back rub didn’t help and sleep wasn’t helping either. My sister had one of her pre-donation appointments so she and my dad came to visit. My dad went in search of some caffeine as another headache cure. Migraines make me nauseous and that one was so bad that I wasn’t keeping food down. The caffeine I drank didn’t stay down long either. My mom took my sister home and my dad and I went for a walk to the other side of the building to see the sunset. On the way back to my room, we ran into the doctor that I don’t particularly like. She started pestering me about whether or not I had pooped, and when I told her no she was not happy. I added that I had been throwing up all afternoon and pointed out that it's tough to poop when I'm not eating. What doesn’t go in can’t come out. She still seemed to think I should be going, and lectured me for not telling anyone that I’d thrown up. I told her the nurses knew so then she was mad that they didn’t tell her. They’d had it under control and didn’t need any prescriptions written, so they hadn’t rushed to tell her (it had only been an hour or so). She asked if I had taken Tylenol, which I hadn’t because it didn’t help the night before, and then suggested a variety of other medications, all of which would have put me right to sleep. The caffeine was helping a little by that point, so I didn’t take anything else. She called me stubborn, which may be true, but hey, the CMA Awards were on that night and there was no way I was sleeping through them. I didn’t explain that to the her, but I’ve gotta have my priorities. At the end of the awards, I took the recommended oxycodone, which put me right to sleep and finally got rid of my headache! Apparently I thanked my nurse in the middle of the night, but again, when I take drugs that knock me out, my memory isn’t so great. It made me so sleepy that my nurse kept waking me up to pee because my fluids hadn’t slowed down and I wasn’t waking up by myself as often as I usually did. Again, I don’t really remember this but I know it happened. On Thursday, I remained mostly headache-free. I had an appointment with the radiologist in the morning. The timing was unfortunate because I needed two IV medicines while I was there, so my nurse had to come all the way to the other side of the hospital to find me. Later that day, my dad and I played 12 rounds of Yahtzee. When I was little, my grandma called me the Yahtzee queen because I would always win but I seem to have lost some of my talent. At the beginning of the week, my doctors had said my numbers would probably be low enough to go home by Thursday, but they were not. My parents switched places again. With the headaches and nausea, I hadn’t been eating much. My first real meal in days was macaroni that night, but my mom wasn’t impressed because I’ve continued slowly losing weight and she wants me to eat more. I pointed out that eating food doesn’t do me any good if I can’t keep it down. Since my levels weren’t low enough, the doctors upped my fluids. Even more frequent bathroom trips – yay! The doctors also kept looking at my toe. I picked at it a lot after soaking it and it was starting to feel better. Of course the doctor who prescribed the antibiotics thought they were helping, but I think my picking at it (which she said not to do) helped more, since it felt better almost immediately after. On Friday morning, my methotrexate level was finally low enough to go home. Thanks to hospital time, we didn’t get home until mid-afternoon. As soon as we got home, my sister was begging to open a care package we received from Cool Kids Campaign. My parents told her we had to wait for everyone, which meant I had to be home from the hospital. The box was filled with stuff for all of us, which I know was a pleasant surprise for my brother who I think gets lost in the chaos sometimes. Last time, he was the middle child when I was sick and my sister was a baby, and now I’m sick again and she’s my donor. Anyway, we all appreciated the package and have already begun enjoying the gifts. I’m sitting under my new blanket right now and my sister wore her fuzzy socks to soccer and has already picked out which ice cream flavor we’re making first with the ice cream maker. I’ve spent a lot of this weekend sleeping to make up for all the sleep I didn’t get in the hospital and catching up on messages and skype calls that my migraines made me ignore. I’ve still been a little bit nauseous but for the most part I’ve been eating real meals again. Two of my friends came to visit today which was a lot of fun as always. We looked through a photo album that included pictures of my 6th and 7th birthdays, both of which both of my friends were at. It’s amazing to have friends that I’ve known for more than 2/3 of my life. The weekend ended with homemade chicken soup and bread so it’s been pretty good! I laughed until I almost cried multiple times today, and my nails have been painted to look like the galaxy. While I was inpatient, we got a little bit better feel for what’s coming up, not just from the radiation appointment but also from the nurses. I’m not sure if I explained this earlier, but when I first relapsed, I got a team of nurses which includes my primary nurse and three other associate nurses. My primary nurse was my primary nurse the first time, and I already knew one of the others from camp. It didn’t take long to become close with the other two as well. Anyway, my mom and I were talking to my primary nurse about the transplant process. The conversation started with me asking about the decorating rules because if I’m going to be there for an extended period of time, especially during the holidays, my room is going to be fun. Even if I don’t feel well enough to decorate, I know a few of my friends already have some ideas in their heads. She explained some of the rules and also said that the people who do the best are the ones who have a routine. Even if I don’t feel like eating breakfast, I should at least think about the fact that I should be eating breakfast and I should set a goal for each day, such as walking a lap around the floor by a certain time each day. She also said that a lot of people make paper chains to help count down the 100 day period and it’s good to find something to look forward to each day. That night, I couldn’t fall asleep because I was worrying about what I was going to do to stay motivated. Even the few days I had been in the hospital this week were rough, and 100 days is way longer than I’ve ever been away from home. My thoughts wandered to some of the blog comments and messages I read that day (side note- if you text/facebook message/comment or message me on my blog/send me mail, I promise I read every word. It takes me a while to reply, but I appreciate all of the messages and I do my best to reply eventually!). Some were anonymous, some from friends and family, and others from people I didn’t even realize knew about my blog, but every one put a smile on my face. It occurred to me that there is nobody better to help me get through probably the toughest three months of my life so far than you! The newest page on my blog is called “Countdown” and has a form where you can submit a message, quote, random fact, joke, story/memory, boredom buster (that I can do in the hospital) or anything else entertaining. Your submission can be any one of those or, even better, some combination. It can be anonymous if you’d like but there’s a space for your name if you want to include it! Two of my wonderful friends will be printing out the submissions and each one will be a ring on a paper chain. The paper chain can help decorate my hospital room and each day I’ll be taking down one ring until my 100 days are up. I set up the form to send the comments to my friends instead of me, so I will be waiting in suspense. The form will be up until sometime the week of Thanksgiving so you’ve got some time to think of something good! My friends will be putting it together in time for me to take it when I’m admitted on Black Friday. I wish I could be part of the crafting process, but I know I’d peek at the messages because you guys are so awesome and I know the submissions are going to be great. Just make sure you submit anything you want in the paper chain to the Countdown tab at the top of this page. Thanks ahead of time! I can’t wait to see what you guys have to say! This upcoming week includes one visit to clinic and lots of pre-transplant tests including x-rays and heart tests. We’re also working on figuring out where we’re going to stay during the 100 day period once I get out of the hospital. I really appreciate the continued love and support, and I’m working on replying to everyone’s messages, texts, and comments – I’m not ignoring you guys! Thanks again for being awesome, and if you have time, think of something good to add to my countdown!
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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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