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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The doctors. Today I decorated my room with a bunch of pictures that I had printed for college. If I get all settled in, then it’ll be time to go home, right? A bright pink Care Bear (the cheer bear) and my pictures definitely brighten up the room a bit. The view from the 11th floor can be nice, but I will admit I miss being at home in the woods. The sky was beautiful the other night though! There was a bright pink cloud that disappeared pretty quickly but we enjoyed it while it lasted.
My fever has been gone since the ER last Friday night (well, Saturday morning) but my ANC is still too low to go home. If you go to clinic and have an ANC of 0, they let you leave, but once you’re inpatient, it has to get to 200 before they let you go. The doctors and nurses keep mentioning the ANC dance, but I have yet to see a demonstration so I’m not quite sure how it goes. They give me platelets and red blood cells when those counts get too low, but unfortunately I have to make my own white blood cells. Because of the chemo, I’m not making many right now, which is good overall but bad for going home. It feels like I’ve been here forever but the doctors said that some kids don’t get to go home their entire first month, so I’ve been thankful that I had a while at home before I got a fever. It’s still frustrating to sit here waiting for my counts to go up though, knowing that they’d probably be going up just as quickly (slowly) at home, where I’d have more freedom. However, this isn’t a time I really want to push the limits so I’ve been trying to stay busy and enjoy the little things. The other day we discovered that tacos are available for lunch and dinner if you ask correctly. They’re nowhere to be found on the menu, but I’ve had them twice now! Also, the nurses are always happy to see me even though they have to wear the isolation gowns. It’s nice not to be a dreaded patient! I’m still on isolation for the cough that I’ve had for a month, but we were eventually informed that I can leave the floor. I’m not allowed to walk around the floor because I could get other people sick, but in the afternoons I’m disconnected from my IV pole for a few hours and can wander around the rest of the hospital, masked of course. We don’t really understand the rules either, we’ve just been following the instructions. Tomorrow, since it will have been a week since the flu swab (which is negative so far), I’ll be off isolation on the floor and can go to the playroom or just walk around the floor. Too bad I already missed the massage day… Overall, it’s been a pretty uneventful week. Allergic reactions are significantly less scary when you know what’s going on. After everyone assumed I was allergic to TPA the other day, we decided there was something else stuck in my line that was causing the reaction. I’ve been drinking plenty of water so my fluids have been slow, but when I got chemo through my line on Monday night at a faster rate, I had another allergic reaction even though there was no more TPA. This time I wasn’t as sweaty but I was still nauseous and couldn’t feel my face. Still scary, but less so because I knew what was going on. The next day, after being disconnected from my pole for a while, the nurse flushed my line and I had a very mild reaction, just nauseous this time. Since then, I’ve been fine, so we’re thinking whatever was stuck is all gone now. Either way, the doctors said I’m not going home with my PICC line because at home it’s harder to make sure there aren’t any problems. My last chemo that I need through the PICC (I get a new line at the end of the month, I just don’t know what kind yet) is scheduled for Monday, but if my ANC is high enough to go home before then, it sounds like I’ll get the medicine a little early so they can take out the line. It’s been a fun few weeks but a shower without a cover on my arm will be nice! I’ve been sleeping a lot (or trying, my steroids make it hard to sleep well) but I’ve been keeping pretty busy while I’ve been awake. I’m watching the first season of Nashville again in preparation for season two starting next week. The internet is slow but it's enough for skype/google+ which is great for keeping in touch with my far away friends. I also had a surprise visit from my boyfriend on Wednesday, which happened to be hospital bingo day so he got to play too. One of my parents is always here and I’ve had a few brave visitors who don’t mind the yellow gowns and masks. My two online classes at Drexel start on Monday and I’m definitely looking forward to having something to do. We’re still working out getting rid of my housing contract and all that fun stuff but it seems like I’m set for classes. I’m also still working on The Triangle, Drexel’s newspaper, from off campus. Doing layout with hospital wifi was slightly painful at times but it was great to get back into it. Not moving in tomorrow is going to be tough, but it's nice not to be completely disconnected even while I'm off campus. If you’re feeling bored, text, scramble/words with friends, ruzzle, or snapchat me! Entertainment is always appreciated and I’ll reply when I'm not asleep. I also just joined the Apple world with an iPad mini from my wonderful cousins and family, and will have FaceTime figured out at some point. I’d work on that now but it’s sitting right next to a box of delicious chocolates that I’ve already eaten too much of today… Sorry I’ve taken forever to get this all updated but I think that’s finally about all the news I’ve got! I know I’ve been saying this a lot but I really am surrounded by the greatest group of people, and have no idea where I’d be without you guys. Love you, and thank you, thank you, thank you for all of the thoughts, prayers and support. On Friday, I came into clinic for a spinal tap and blood work. My ANC (the immune system number) was still 0 and they decided I’d probably need a blood transfusion when I came back on Monday. The spinal tap went much better than the first one (it didn’t take multiple tries OR multiple people) which was a relief. Boring is better. For spinal taps all I need is some Versed and I don’t remember a thing. I slept through the whole procedure and for an hour after before my mom somehow convinced me to get up so we could go home. The Versed hadn’t worn off yet which was unusual, and I don’t remember that conversation. Or getting to the car, or the drive home, or getting in my bed. I woke up hours later for dinner and was still exhausted.
At 11, when I was going to bed, my mom came back to my room to see if I needed anything and caught me adding another blanket to my bed. It wasn’t cold in my room. She asked if I had a fever and of course I didn’t want to have a fever but she got a thermometer. 100.9. I have to go to the ER for anything 100.3 or above. I insisted on another thermometer. 101.1. Let me tell you, going to the ER late at night does not sound fun. Going to the ER late at night when it means getting out of your own warm, comfy bed is even less fun. Boring Friday nights are better than Friday nights in the ER. However, by the time I got here, my fever was even higher, so it was definitely a necessary trip. Fevers are a big deal, especially with an ANC of 0, so I got every test out there to see what was causing the infection. Go pee in this cup, stick these swabs up your nose, time for a chest xray, we need blood from this arm and blood from both lines of your PICC! And so the adventure began. They couldn’t get blood from the white line of my PICC, and decided not to worry about it at the time but it was important later. While I was getting antibiotics, they have to do vitals every five minutes. My heart rate was so high from the fever and being anemic again that I was setting off alarms left and right. I’m still alive though so no worries. The antibiotics worked pretty quickly and by 5am when I was finally able to go upstairs to the oncology floor, my fever was gone! Considering I have to stay here for at least 48 hours fever-free, quickly getting rid of my fever was nice. I still have the cough that I’ve had for about a month now, but since it’s the beginning of RSV/flu season, I’m on droplet isolation because of it now. Not just the nurses but also anyone who comes into my room to bring food, clean, empty the trash, etc, has to wear a yellow gown and a mask. My trash cans fill up pretty quickly. I’m not allowed to leave the room and my parents have to wear masks when they do. If I have visitors that I don’t live with, they need masks, but I think they can skip the fashionable yellow gowns. Later that day, my nurse decided to get to the bottom of the white PICC line issue. She put some anti-clotting stuff called TPA in it, which I had 9 years ago in my port with no problems. This time, before it was even all in the line, I was nauseous, sweaty, coughing more than normal, and couldn’t feel my face. The entire thing was numb and I don’t think I have EVER been so terrified. My room was instantly the popular room, which I don’t think is ever a good thing in the hospital. Boring is better. My reaction started to fade after a few minutes and they ordered Tylenol and Benadryl for me. Nobody had ever seen an allergic reaction to TPA but my nurse took it out of my lines and added it to my allergy list. Tape and TPA, I’m such a strange patient. Between the Benadryl and my lack of sleep, I slept most of the afternoon. Even getting two units of blood wasn’t enough to really wake me up. Before the transfusion, my red blood count was so low that a lot of little kids would have been dizzy. I was tired but not dizzy, which surprised everyone. It’s amazing how my body got so used to being anemic all summer that it can deal with these things. Anyway, after a full night’s sleep last night, I feel great and my fever has stayed away! Now I’m just sitting here hoping that the rest of my stay is calm and boring! Everyone at Hopkins is great, don’t get me wrong, but my own bed and home cooked food cannot be beat, not to mention nights uninterrupted by beeping machines and vital signs every four hours. Did I mention the food is great? Hospital food has definitely gotten better in the last nine years, but there is always room for improvement. Even though I don’t really leave the house (there are germs out there!), it’s so nice to be in my own space and have my family together, not split between home and the hospital.
Yesterday, I went back to Hopkins for the first time since I was discharged last week. I needed a little bit of chemo, some platelets, and my PICC dressing changed. My line goes in my arm a little bit above my elbow and the previous dressing had made it tough to fully move my arm. The PICC nurse decided to move the line around a little and now the dressing is on the back of my arm instead of the front. I love it! It’s out of the way and much easier to do everyday tasks. The other exciting news is that my mutations don’t have bad mutations! My leukemia was genetically analyzed and apparently there are no high risk factors. If there had been, I would be going straight to a bone marrow transplant, but since there aren’t high-risk mutations, we’re waiting to see if I’m in remission at the end of the month when they do another bone marrow extraction. My family has gotten tested to see if they’d match me if a transplant is necessary. It’s unlikely that any of you would match me, but if you’re interested in joining the bone marrow registry, visit bethematch.org and help out someone else! For some people, a transplant is a cure, and (I think) all you need is a blood test. I’d love to donate but nobody wants my mutation-prone bone marrow… My ANC (basically, my immune system) is 0, which means it’s very easy for me to get sick but hand sanitizer is a great thing and low counts are a good sign that the medicines are working! My hair is starting to come out, so I’ll be chopping a lot of that off soon to slow it down and make less of a mess. As it turns out, chemo doesn’t really make your hair fall out, it makes it break off, so shorter/lighter is better. Friday is my second spinal tap, but as long as I stay fever-free until then, I’ll be enjoying my week at home! Thanks to everyone for the continued thoughts, support, visits, and food! It has all been absolutely delicious and visitors make any day better. I think that’s about it for now, I love you all! Getting a call from your doctor telling you to head to the Hopkins emergency room as soon as possible is absolutely terrifying. I learned that in August 2004 and I was never expecting to repeat that experience nine years later.
When I got home from Drexel in June, I went to Harpers Ferry for the day with my family so I could see how to get to my internship (at the Appalachian Trail Conservancy headquarters) and go hiking. Less than half a mile into a hike that should not have been a problem, I felt dizzy, sick and exhausted. The eyelid test and a brief discussion of my iron-deficient diet led us to a diagnosis of anemia and I started taking iron pills that night. A few weeks later, we went on a two-week vacation to Hawaii. I was still tired, but just a few weeks of iron pills made enough of a difference that I did an 8 mile hike without needing a helicopter rescue. Mission accomplished, or so we thought. On August 28th, I had taken the day off from work to go to the dentist and my annual check-up at Hopkins. My blood counts showed I was still very anemic and they did more tests to see if they could figure out why. My other counts, including my white blood cells, the usual red flag for leukemia, were in the normal ranges so I went home. In the few hours I was home, it seems like every doctor in clinic looked at my slides. Eventually, they decided I needed to come back in. I quickly packed my backpack with a change of clothes, my computer (but not the charger – I refused to believe I’d be in the hospital long enough to need it), my phone charger, headphones, a book, and my toothbrush. I was not ruining my freshly cleaned teeth just because I was in the ER. I got a ton of fluids and antibiotics in the ER and was eventually admitted to pediatric oncology floor for the night. The next day was a blur of tests. My favorite was a heart ultrasound where I could see my heart on the screen and the blood going between the different chambers. She also drew a bunch of lines on the images and eventually they became 3D images. Technology is so cool. My PICC (peripherally inserted central catheter) insertion surgery took place in my bed which was really strange but interesting (not that I actually remember much of it, gotta love Versed). I have the PICC until the end of the month and it has two lines that have to be flushed every 12 hours. The nurses offered to let me do the flushing, but I didn’t want 16 extra inches of tubing hanging on my arm so I could reach. If any of my nursing friends want to learn how to flush my line, I’m sure my parents would take volunteers! After a spinal tap (well, multiple taps) and bone marrow extraction, the doctors finally had all of the information they needed to officially confirm that my leukemia had relapsed. My spinal fluid was clear, but my bone marrow was filled with leukemia cells. They gave me my treatment plan for the first month, and now that I'm 19 I have to sign the forms agreeing to poison myself. That's a responsibility I could do without. The plan after the first month depends on how my leukemia responds. On Monday, the doctors asked how I would feel about going home the next day. We were shocked. I really did go home on Tuesday though! The doctors also told us that my blood was free of leukemia cells already that morning. This does not mean my body is leukemia-free, just my blood. Even so, it was an exciting step. There are plenty of other random tests, tidbits, and interesting stories from the first few days but I’ll work them into later posts if I decide they’re worthy of posting. I’ll leave you with five things I learned at Hopkins while I was inpatient: 1. My cells looked funny. If you think everything has a fancy name, think again. Those words were used by professionals. The same professionals offered to show me the slides with said funny-looking cells though, which I need to start bothering them about because that sounds SO COOL. Nerd alert. 2. I won the genetic lottery – twice. If you ever wish to win the lottery, I suggest you specify. Pretty much, my normal bone marrow cells mutated into leukemia cells twice. Each set of mutations is very different and even changes the way it acts. Having different mutations is better though – if they were the same, it would mean that chemo didn’t work the first time and I’d definitely need a bone marrow transplant. 3. Talking about things like green pee and how amazing it feels to get blood will have even your closest friends questioning whether you might actually be an alien or a vampire. On Friday, before I started chemo, I got two units of blood. After just one, I felt like a completely different person and was ready to go run laps or something. It was absolutely wonderful. After the blood, I got some blue medicine. Nine years ago, I had a similar medicine that was red. Going to the bathroom after that was frightening. Green pee though? That’s kind of cool, and a picture was necessary. 4. It’s not Labor Day without a picnic. One of my doctors believed in this so strongly that she showed up with potatoes, burgers, and toppings galore on Sunday. She doesn’t eat meat, but we had to have a picnic even at Hopkins. People are just great. 5. Last but not least, I am surrounded by the best people ever. The Hopkins staff is great, and it doesn’t end there. Everyone’s support, through phone, email, or social media, blew me away. I couldn’t keep up with my replies! I knew I was loved, but that was honestly a level of love I could never have even imagined. Then there were visitors, and visitors, and still more visitors. Every day. People from 10 minutes away, people from 10 hours away, people I had seen a week ago, and people I hadn’t seen in years. My visitors wouldn’t always just sit and talk either. They brought decorations for my room, played games, made me snow cones, and dragged me off the floor to the food court. Between responding to messages and hanging out with people, I was hardly bored at all! At least one of my parents was always there with me as well. Knowing I am not fighting alone, because I have the prayers and support of ALL OF YOU AWESOME PEOPLE, makes this journey so much easier. I can’t thank you all enough. |
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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