The past few weeks have been pretty busy and life is slowly getting back to normal. I think today is 114, but I think it’s about time to stop counting! The celebration of day 100 was pretty low-key. I wasn’t feeling great but I enjoyed some shrimp pasta and chocolate covered strawberries, which I’m not supposed to eat yet but I believe there are some rules that are meant to be broken. In case you were curious, my last countdown link included two and a half pages of fabulous cat facts. I’ve been enjoying my freedom even more as my immune system continues to get stronger. My friends have been home for spring break during various weeks throughout the month and I’ve gotten to catch up with a lot of people. Back when the weather was nice, (the picture to the right is the current view out my front door) I went for a walk with my friend and her dog, and another friend and I baked brownies, both activities that I hadn’t done in months. I was introduced to the game 2048 this past week, which is unbelievably addicting. There’s an app for it, or you can play online if you want to check it out. If you get addicted, don’t say I didn’t warn you! I got to 2048 the other day though and I’ve definitely been playing less since then. I’ve seen a few teachers and family friends in the past few weeks, plus my boyfriend came to visit. My hair is finally longer than his! We had one day of gorgeous weather and spent an afternoon outside. Within the past few weeks, my dad and both of my siblings have been sick and I’ve been spending time with a lot more people than usual. I ended up with a sore throat and stomach virus. The good news is neither of these came with a fever so I could be sick at home rather than at Hopkins. At one point, I added itchy watery eyes to my list of symptoms – seems like allergies set in too. I’m not sure what there was to be allergic to considering the amount of rain we got that day but I found something. I remember the doctors told me last time that a lot of people have more/stronger allergies after chemo, so I’m thinking it was a new allergy. Other than feeling blah, the biggest down side to being sick was being unable to go to a mini camp reunion. It would have been the perfect way to celebrate day 100 but I know if someone with all my symptoms tried to walk onto the oncology floor while I was inpatient, I would have been extremely annoyed. There was no way I was risking getting all my inpatient friends sick. On the 12th, I went to Hopkins to re-do all the tests to check on my heart and lungs after chemo. They are so not fun and took longer than last time. Fortunately, I didn’t pass out during the lung function test like I thought I might. After all the tests, I headed up to clinic. I was supposed to see one of the fellows but he was taking an exam so they told us we should come back the next day. He had warned us about the exam but since we couldn’t reschedule the other tests, we were hoping someone would see me anyway. One of the residents volunteered, which meant one of the attendings had to see me too, and my normal PA found time to stop by as well even though she was already double-booked. Basically, I ended up seeing everybody when I thought I might not see anybody! That was especially great because we didn’t need to drive back to Hopkins on Thursday. My day 90 bone marrow continued to show “no evidence of patient.” Also, I only need to go to clinic every other week now. It doesn’t sound like this is normal for day 100 but I’ve been fortunate enough to have very few complications so they aren’t too worried and know that I’ll call if I have any concerns. They’ve gone over the symptoms of graft vs host disease so I know what to look for. Yes, it is still possible to get GvHD after day 100. It’s more likely to happen in the first 100 days, but it’s very serious if I get it now. I went back for my appointment this past Wednesday and things looked fine. The tests from my previous appointment showed my lung function actually improved since November but my heart function is down a little – it isn’t squeezing as hard as it used to. However, it’s only a small difference and they just changed the test so my doctors are still trying to find out from the cardiologist if that might have affected the readings. It’s not unusual at all for chemo to affect the heart but it isn’t necessarily permanent damage either. A few years after my first treatment, tests showed my heart function significantly improved since the end of my treatment so like I said, this isn’t anything to worry about, just something to keep an eye on. Also, the test of my iron level showed that it’s above normal but not by much so I won’t need any bloodletting. That was definitely nice to hear! My hair is getting really long – the first day that it was long enough to touch my forehead I kept scratching, thinking there was something on my face. It’s incredibly soft and everyone enjoys petting my head. There are an incredible number of pictures in which someone else’s hand is on my head, but I can’t blame them because it’s so fluffy! I’ve been compared to puppies, kittens, rabbits, and more. If only hair was heavier... My doctors (and parents) are still concerned about my weight – I was getting close to my goal but those stomach viruses didn’t help. I’m still drinking lots of soda, juice and hot chocolate and eating ice cream every night. Last night I even had two bowls! I submitted the last of my assignments for all three classes and finished the term with a 4.0! I really enjoyed having something productive to do with my time. In addition to classes, I’ve spent a lot of time cleaning my room/closet. My college friends don’t seem surprised at all because my dorm was always pretty clean, but my room at home has been a disaster all my life. I’ll post a picture once I’m finished! I finally read the Divergent series, which has been recommended to me multiple times but I haven’t been reading much over the past few months so I never got to it. Hopefully I’ll have more time to read over the upcoming months. Speaking of the next few months, I start co-op on Tuesday! I was accepted for a position a few weeks ago and Drexel finally got all the paperwork figured out this past week. Apparently it was easy to switch my plan of study when I “wasn’t eligible for co-op” but it’s a lot more complicated to switch back. I’m still not sure why they bother to add a step and switch it in the system before the appeals process, but they do. Anyway, I decided something part-time would be most appropriate for my energy level and I’m starting as an intern at Cool Kids Campaign this week! I can’t wait to be even more involved in such a great organization and help other kids with cancer. If you’re interested, it’s not too late to join my family’s team Worst Best Thing for The Color Run in Baltimore in three weeks, or you can volunteer and throw cornstarch at people. It’s a ton of fun to see so many happy people passing by or to make color angels! On Thursday afternoon, I took a giant step in conquering my fear of public speaking and gave a speech at a Leukemia & Lymphoma society event at Towson. When I was asked to speak, I almost said no because I was so terrified, but everyone encouraged me to say yes, and they were projecting 50-75 people. The day before the event, I found out that number increased to over 100. I lost count of how many times I read it my speech out loud in my room and how many different outfits I tried on before finding something that fit and was weather-appropriate. My dad told me to think of the speech as a conversation, and by the middle of my second paragraph, I felt much more comfortable. Even so, I still have no idea if anyone clapped because I was in such a daze when I finished. A lot of people came up to me later though so I’m declaring it a success! While I was at Towson, I got to hang out with a friend that goes there, and I’m looking forward to being in the area more often for my co-op. Things are definitely getting more normal, but I still don’t have my normal energy level and I certainly don’t have a normal immune system yet. I’m trying to avoid as many germy situations as possible and I can’t wait until the end of flu season and warmer weather. I still can’t believe it’s actually snowing right now, on the second to last day of March. Rainy days always bring me down, so I spent a bit of time today looking at pictures from Hawaii to bring some sunshine into my life. Here’s a particularly sunny picture in case anyone else needs a reminder that the sun exists! :)
1 Comment
Natalie
3/31/2014 09:55:51 am
Great blog and so happy you are doing so well. Congrats on your speech and your 4.0! Speaking of rainy weather, I get down during rain too. Two songs that always cheer me up, and I recommend, are "Here Comes the Sun" by George Harrison and "I Can See Clearly Now" (not sure who sings it). They are oldies to you, but great songs!
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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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