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.
6 Comments
Annabelle
9/12/2013 04:46:26 pm
I love you cousin 😊😊❤ the nurse/nerd/patient in me has these things to say. First, versed is awesomeeeee hahaha. Second the whole thing about "funny" looking cells - it's true! I can send you pics of what we are taught they are supposed to look like 😜 I do have one question - what is this eyelid test of which you speak? Like follow the pen type test or? Keep on with your good outlook baby, I really am trying to come down I just unfortunately scheduled my work rather poorly before I found out 😞 I love you and I'll take great care of that PICC and hopefully it'll be out soon 😊 in the mean time (meanwhile back at the ranch) my college / school of nursing is doing a be the match bone marrow registry drive thingy (but of course you won't be needing anything of that 😘)
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Karen
9/21/2013 04:41:29 am
Hi I love you! You make it pretty easy to guess when you post your name... Yeah Versed is great, it really is. And pictures would be awesome because I never saw my slides! I should get on that. The eyelid test is just pulling down your eyelid and seeing if it's red or not. I pretty much had no color when I got back from school. I was going to suggest googling anemia eyelid test but I just did and all the pictures of random eyes are kind of creepy so never mind.
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Andrea
9/13/2013 01:18:51 pm
Hi Karen,
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Karen
9/21/2013 04:23:45 am
Hey Andrea! Thank you so much, I really appreciate it! Phillip is great and has definitely mentioned you, it's awesome that you guys have been friends for so long and I'd love to meet you sometime! :)
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Savannah
9/15/2013 02:14:20 am
I love this blog Karen! You're a great writer. Keep on postin!
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Karen
9/21/2013 04:16:57 am
Thanks Savannah!! Miss you<3
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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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