This past two weeks haven’t been too eventful, so I’m combining them into one post. Also, I’m including a quick note about blogging before I get into my updates. I can view simple statistics for this page, so I know that at least a few people have checked my blog every day since I made it public, even if I haven’t announced a new post. I don’t know who you are, and I doubt it’s quite the same people every day, but thanks to everyone who reads these updates and enjoys them enough to come back frequently to check for updates. Within an hour of announcing my last post, it had over 100 views. By the end of the day it had almost 400. I don’t think anything I’ve ever written has been read by that many people, other than articles I wrote for my high school newspaper (and even those...do that many students actually read the newspaper, or just flip through for the pictures?) I started my blog because I thought it would be a convenient way to update everyone and I figured it would be less obnoxious than posting every little thing on Facebook, but it has become so much more than that. Of course my friends and family read it as I expected, but people keep sharing it and I know there are a lot of people I don’t know who are reading my updates. Whatever your reason for reading, thank you. As you’ve noticed, a lot of them are quite lengthy and they take some time to write and edit (some of them are longer than papers I wrote for college courses). Knowing people are waiting for my updates makes it easier to write even when I’m tired or don’t feel great. Some people have told me how much they’ve learned from my posts, and others have told me it reminds them how much they have to be thankful for. I love knowing that something as simple as a blog can make a difference for other people and it makes me even more certain that I want to pursue a career in scientific communication writing about new medical research. Now that I wrote about 300 words about how awesome you all are, I’ll actually update you. I think I forgot to mention in my last post that after I found out how the transplant process works, I decided to drop my classes and get a medical leave for this term. I also don’t think I mentioned that the pain from the mouth sores would be bad enough that I’ll have a baseline dose of pain medicine, plus a button to push to get more if it wasn’t enough. Basically, I’m going to try to sleep through the worst of it, so two classes on hospital wifi were not something I felt like dealing with. Even with clinic visits every day, I was getting behind and realized they were unnecessary stress. I started at Drexel with 34 AP credits, so I’m using all of my hard work in high school to relax and focus on getting better now. Hopefully next term I’ll feel well enough to try again. I also found out that, due to technical difficulties, I can no longer work on The Triangle from here. I sat in my bed and cried. Even though I knew I was going to have to take a few weeks off from it, losing it entirely was terrible. Between losing classes and The Triangle, I felt like everything productive had been taken from me. If you know me well, you know that I like to be productive and feeling useless/like I’m accomplishing nothing is the worst. I know there are people who would kill for a few months to sit around and watch movies, but I get restless. Classes and the newspaper were also major ties to Drexel and my normal life. Normal is something I cling to as much as possible. Some of my friends wonder why I don’t talk about being sick more often, but I’d rather just have a normal conversation and update them when there’s something new to say. Some don’t want to complain about their problems to me because I have my own to deal with, but again, I’d rather have a normal conversation. My life has changed since I relapsed, but it hasn’t stopped and I know nobody else’s has either. The last day I got any chemo was October 11. I wasn’t supposed to go back to clinic until the next Friday, the 18th. They knew by that point my counts would be low enough to need a blood transfusion and told me if I needed blood earlier that I should come in. By Tuesday, I was pretty tired but I didn’t feel dizzy or anything. On Wednesday, I got dizzy if I stood up too fast (and did walk in to a wall because of it, oops) and walking the length of my house was exhausting, but I thought I’d be okay until Friday. My body had other ideas. I got up to go to the bathroom around 5am on Thursday morning. By the time I sat down, I felt nauseous and exhausted and I knew I should call my mom but by the time that thought formed in my head I fainted. My mom heard me fall and the next thing I remember is her holding me up and me asking how she got there. Fainting and not remembering is probably something that should worry me but I’m so sensitive to dehydration that I’ve fainted from that a few times before. I eventually made it back to my bed and was instructed not to get up without someone to help me. We headed to the clinic as soon as my sister got on the bus that morning. The doctors were concerned that I hit my head, but I knew I didn’t fall hard enough to cause a problem. They gave me three units of blood (previously I had only ever gotten one or two), which should have taken 6 hours but they sped it up to only take about 4. I went home feeling MUCH better, with an appointment for Monday (the 21st) to check my counts and probably get platelets. The weekend was incredibly busy, which thanks to the blood transfusions I had plenty of energy for. One of my best friends was home from school for fall break, so I saw her three days in a row. Saturday was my brother’s homecoming dance, so of course I had to go take some pictures. A few of my other friends visited on Sunday, and then I went apple picking with my family. Walking around the orchard was a bit tiring, but 23 pounds of apples were worth it. They’re delicious! For the 24 hours before my appointment on Monday, I was supposed to do a urine collection. I had to pee in a hat (not one you’d wear on your head but that’s what they call it) and save it all in half gallon plastic jugs. It needs to be refrigerated, but luckily ice in a plastic bin is sufficient so it didn’t need to go in the fridge. It’s weird enough having all of my shots in there with the food. What's in your fridge? By Monday, my platelets were dangerously low. They print out sheets with my blood counts compared to the normal ranges. If my counts are very abnormal, they’re highlighted dark gray which means “panic” according to the key at the bottom of the page. Not surprisingly, my platelet count of 10 was dark gray, since the lower range of normal is 150. Platelet transfusions are very quick, so we were home in the early afternoon. Thanks to the white blood cell boosting shots, my white blood cell count and my ANC were pretty normal. Unfortunately, as soon as the shots stopped, they told me my counts would drop by 2/3. It was nice while it lasted. I had a few visitors this week and baked some wonderful food with the apples. The past two weeks have been pretty busy with all of my fertility preservation measures, which I’ll explain in a separate post for those of you who actually want to read about that adventure. I caught up on emails and my blog after those few weeks where I was too busy, sick, or upset to feel like writing. I helped out with layout for The Triangle over google+; it was nice to still be contributing a little bit. On Thursday, I went apple picking again with one of my friends and her friends from school. I went shopping for the first time since I was diagnosed on Friday and finally got some thank you cards so I can write notes to everyone. My boyfriend came down on Saturday morning and I had enough energy to go outside and take a walk which was refreshing. I made an apple cheesecake with my sister (it sounds weird but don’t knock it til you try it) and my grandparents came down for the day today so it was another fun weekend. Thank you all for being part of my life and making a difficult journey a little bit easier. I have another off week this upcoming week so there probably won’t be many updates, but we’ll see!
3 Comments
Aunt Steph
10/31/2013 04:16:38 pm
nice update kiddo! i am so happy you were able to enjoy some normal time with Phillip and your friends! the Triangle will miss you and you will enjoy it even more when you get back to it!! xoxo
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Natalie Shollenberger
10/31/2013 05:09:42 pm
Another super blog post! I enjoy reading your updates. I feel like I get to know you much better through these. Kudos on your 34 A.P. credits. That is impressive! Sarah and I talk about you often and are keeping you in our thoughts and prayers.
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jeanne nolan
11/4/2013 11:21:02 pm
This is awesome. I hate to admit it, but this is the first chance I've had to check out your blog and I'm loving it. You are truly inspirational.
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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
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