I started another post on Thursday night at Hopkins, but then I found out I was going home! I have lots of updates since my last post, but I kept hoping I’d be able to say I was updating you from home. Now I finally can! Decorating my room didn’t get me home any faster, but it was nice to have pictures of my friends and family to look at all day instead of plain white walls. Everyone who came in the room checked out the photos, and a few people there were in the ones from camp so they found themselves on the wall. I was finally taken off isolation right after my last post. The first day I walked 25 laps around the 11th floor. I was so excited to get out of my room! There was also a beautiful sunset that night, which I only got to see because I was doing laps (my room was on the east side – I got a nice view of the sunrise the next morning). On Saturday, my ANC (the immune system number) was 110, the highest we had seen in weeks. As all of my friends were moving back in to college, I was hoping I’d be able to move back home. Not moving in was tough, but I’ve loved seeing pictures of everyone’s rooms and I know I’ll be back as soon as possible. Meanwhile, I started working on a fall bucket list. Last year, I was miserable in the city in the fall, and made my parents come up one weekend to take me hiking so I could enjoy the leaves. I’m determined to pick apples and/or pumpkins, go to a corn maze, and do other fun fall things while I’m here in home sweet HoCo where these things are easily accessible. My ANC was 0 on Sunday. That was the first time in weeks that I really cried. I just wanted to go home. I had been there for over a week feeling fine and had so much stuff I wanted to accomplish that I couldn’t do from the hospital. Unfortunately, my bone marrow had other plans. I guess I should be used to that by now. The nurses were all shocked that I was back at 0, and argued for a while over who had to tell us. I had a new (to me) nurse that night, and she wrote me a really nice note saying she enjoyed taking care of me and hoped I’d let her be my nurse again even though my ANC was 0. When my parents switched places, my dad brought my siblings in, and 13 bagels so I had something other than hospital food to eat. It was nice to have the whole family in one place, even if it was a hospital room. While we were all there, one of the PICC nurses came in. My dressing wasn’t due to be changed until the next day, but she remembered me and was hoping mine was peeling up so she could do it a day early. Unfortunately for her, it looked fine. It’s always a pleasant surprise when people I’ve spent less than ten minutes with remember me and actually come looking for me. Monday was a big day- I got my last chemo of the first phase and classes started at Drexel! At 8:15am I was on blackboard reading syllabuses. Yes, I was that excited to have something to do. I’m taking Criminology and Desktop Publishing and both are cool so far! Hospital wifi is painfully slow though and it took me absolutely forever to load the videos I had to watch. One 4 minute video took about 20 minutes to watch, though the others weren’t quite that slow. My ANC was 50, so as much as I wanted to wait until I was home to do my work, I knew that wasn’t really a good idea. On Tuesday, they took out my PICC line! Since I wasn’t getting any more chemo, I didn’t really need it anymore. The white line was still causing trouble; they could put fluids in it but couldn’t draw blood from it. I had Versed when they put it in, but taking it out was a painless process. They told me taking the tape off the dressing would be the worst part, and they were right! The nurse sat there talking and just as I realized she was pulling it out, she was finished. All 42 centimeters were sitting there in her hand. Usually they throw them away but since mine had been having problems, they went off to experiment with it. The nurse came back later to tell me they found something about the size of a grain of salt in my white line. No wonder I had so much trouble with it! Whatever it was probably caused my allergic reactions, and certainly was making the line hard to flush. Without a PICC, I needed a normal IV put in my arm to get antibiotics. They offered to give me a second IV for blood draws, but since that was only happening once a day I told them to just stick me each time. I didn’t really want another needle in my arm all day. For the one IV that I did get, they brought the cool vein finder machine into my room. I took a picture because it was just so cool. My IV went into a spot on my arm that I never would have known it could have. My mom had to check out her arm too. Technology is so cool! My ANC was slowly climbing throughout the week. 80, 110, still disappointingly far from 200. I had lots of visitors, from family friends to past doctors and nurses. Every visit made the days go by a little faster which was much appreciated. I spent the rest of my time doing homework, walking laps, surfing the slow internet, playing on the iPad (FaceTime is so much fun!) or sleeping. I lost about five pounds while I was in the hospital, which we decided was probably muscle since I hadn’t been doing much. My mom encouraged me to eat chocolate at every opportunity and we started doing stairs in addition to our laps. Did I mention I felt fine? I don’t think most 11th floor patients walk up 5 flights of stairs in a row without a problem. My bone marrow was making lots of other cells, but apparently white blood cells were not a priority. My platelets are back in the normal range, and even my red blood cells were almost normal. I told my mom I was proud of my bone marrow, and the next day my ANC didn’t go up at all. I think it got cocky. On Thursday morning, my ANC was 180. SO CLOSE to the 200 I needed to go home, but not quite there. My dad sent me texts that said “ANC” over and over every few hours, and my sister sent me some through the chat on Scramble With Friends (we play each other, and that chat is how we talk when I’m in the hospital). My doctor said he would suggest afternoon bloodwork, but it was a crazy day on the 11th floor. I don’t know what was going on, but there were lots of alarms and it’s safe to say there were other people that needed the doctors and nurses more than I did that afternoon. I didn’t see the doctors doing rounds until after dinner, when usually I see them in the late morning. They told me they were going to look at the blood smear from the morning and recount my neutrophils to see if they got a higher ANC than the lab, and I had new labs scheduled between 8 and 10pm. Two opportunities to go home. I spent the day working on layout for The Triangle, which takes three times as long as it should with hospital internet. However, a nice medical student came in to talk to us and signed me in to the real internet. I don’t know her name, but she made my afternoon. I can’t say day, because my day got even better. We walked a bunch of laps and a few flights of stairs and enjoyed the sunset. I was really tired and had a headache so I was sitting pretty much in the dark when my doctors came in. They looked at my slide again. One of the doctors pulled out his phone and started typing numbers in his phone. He showed me the screen: 205 and some decimals. I’ve never sat up so fast – I was going home! He offered to let me keep the slide, which I did, so we’re wondering if he “counted” as many neutrophils as he needed to see for me to go home and got rid of the evidence. I don’t know, and I don’t care, because I’m home. They didn’t even examine me, just told me to have an awesome weekend and left me to pack. Of course, with hospital time, we didn’t leave for almost two more hours, but there was no way we were staying another night. I still wake up for 4am vitals because my body got so used to it after 13 days, but I’m sure that will fade eventually.
I have been very busy since I’ve been home. I’ve been eating to make up for all the hospital food I didn’t eat. HOME COOKED FOOD IS SO GOOD! That’s definitely a perk of not moving back to college. Friday morning I went to get my dress altered for the wedding I’m in next weekend. I took my grandma and sister shopping for quilting supplies that afternoon. Saturday morning, I drove for the first time since I was diagnosed. My sister and I went to Cool Kids Campaign to paint tiles. It was great for me to catch up with people I hadn’t seen in a while, and she had a lot of fun painting. We have lots of family visiting this weekend which is a ton of fun (and they brought me a gorgeous snow globe and a bunch of clothes which is always cool too) and I have a few friends coming to visit tomorrow and I can’t wait to see them! My grandma and I can finally start working on my tshirt quilt now that I’m home to pick out all of the shirts I want included. I finally decided to get rid of the rest of my hair. It was making such a mess and watching a bald spot slowly form was just too stressful when the end result is the same anyway. I’ve gone back to bandannas for now (though some of my collection has gone missing) but also have gotten some cute hats so I’ve got lots of options. Maybe once my head gets used to being cold I can go without anything, but after all that hair it’s quite chilly at the moment. I’m also looking into a wig, not to wear all the time but for things like co-op interviews. We’re still dealing with Drexel and the housing issue, but my dad has finally found the people who understand that there are exceptions to the rule. I’m so thankful he’s dealing with that stuff and letting me focus on classes and naps. I go back to Hopkins on Monday for another spinal tap and a bone marrow extraction. By Wednesday, we should know which path I’ll be taking for the rest of my treatment- a few years of chemo or a bone marrow transplant. My family all got tested to see if they match in case I need a transplant, and my sister is an exact match – we are HLA geneotypically identical if you want the scientific term. A sibling match is best case scenario for a transplant and this news was a huge relief, though we’re hoping it won’t be necessary, because transplants terrify me and the doctors did admit that it would be tougher on someone her size than a teenager. We haven’t said anything to her yet and won’t until we know if we need it. She didn’t have a good experience getting her blood drawn for the match testing, and currently has no idea how serious leukemia can be. What’s the point in telling an eight year old that her sister has a life-threatening illness? There isn’t one, at least not right now. Thank you so much for all of the love, support, food, and visits! And thanks for reading this ridiculously long blog post! I didn’t even complain too much about hospital food…though there was that one day they gave me pita bread instead of tortillas. Anyway, that’s all for now, I love you guys!
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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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