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!
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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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