Now that I’m home and less stressed about my classes, I’m trying to get back into the weekly (or maybe bi-weekly) blog updates even though there aren’t as many medical updates anymore because today’s day 93! Another week and I can officially stop counting. Speaking of counting though, the countdown chain idea has really taken off. The child life specialists at the hospital absolutely love it and want all of the transplant families to know about it. The chains really aren’t difficult to make (my most recent one took less than four hours) but the paper and ink add up so I can’t make them for every patient. I helped set up a form that can be shared with the families so they can get submissions and make their own. I’m not usually a very creative person, so it’s exciting that an idea as simple as a paper chain has already helped some of my friends and will be helping even more patients in the future. Thanks to everyone who submitted messages for mine and to my friends that put together a chain so awesome that I couldn’t help but pass on the idea. My classes are wrapping up which is a relief. It was nice to be productive and stay on track but I’m looking forward to having time to read some books that aren’t textbooks. I’ve had enough communication theories and cognitive psychology for a few months. Two weeks from now I will be finished with all of my final papers and exams. I’ll have a week off and then I’ll start my co-op! The paperwork is complete on my end but I’m still waiting for Drexel to finalize everything on their end so more on the co-op next post. In addition to my co-op, I’m looking forward to volunteering both at Camp Sunrise and SunSibs this year! It should be a pretty good summer after a tough winter. Last Sunday I went to the camp reunion. Even though most of my closest friends were away at college, it was great to see so many people that I hadn’t seen since August. After the reunion, I went to the White Marsh Mall to check out the Cool Kids Campaign tile display. It’s in the wall on the way to the bathrooms by the food court and Susie and I both have tiles there! If you’re in the mall, check it out! It was great to see so many people looking at it while we were there; I had to wait for a while until I had a clear shot for a picture. My tile has an orange ribbon for leukemia, the two years I was diagnosed and I added 24 dots (yup, that’s for you AJP) in Camp Sunrise and Drexel colors. To the left is my handprint and to the left of that is my sister’s tile. I’m not sure of the story behind hers but it’s definitely colorful. Sunday night, we got a lot of snow. I know everyone else is tired of the snow, but I was really excited to get another storm. The phone rang on Monday morning and it was one of our neighbors calling from the end of our driveway – she had skied over because our road wasn’t plowed. My family put on their gear and I decided to join them. I don’t think anyone can understand how much fun cross-country skiing is until they’ve tried it. It’s not all uphill and it’s really not that much work unless you’re on really hard trails but it’s a lot of fun and good exercise. Anyway, I skied on my road a little and then around a trail in the woods behind our house. It wasn’t that far, but it was way more than I’ve done in a while and I was glad the snow gave me that chance. My family went a lot farther but I was exhausted. I don’t have too many medical updates but as I’ve mentioned before, boring is better! I had my day 90 bone marrow and spinal tap this week. They changed the Versed and it tastes a little better now! Still gross, but better. This upcoming week, I have all the annoying tests to see how much damage the chemo and radiation did to my lungs and heart (hopefully minimal). It’ll be a long day but that’s the last of the day 90 tests. I’ll get the results from the bone marrow and spinal tap and I’ll also find out how high my iron levels are and whether or not they need to deal with that. Everything has looked fine recently so things should be good but it’s always better to double check! While I was sleeping off the Versed, the doctors told my mom that I am cleared for travel. I’m looking forward to hearing this from them myself this week and clarifying a few things, but that’s great news! They’re less worried about bacterial infections as my counts continue to go up, and I can fight a viral infection (but it would take longer than most people). I’ll still be sanitizing a lot but it’s nice to know that I have some of an immune system now. I really want to visit Drexel again soon but my standard method of transportation, the Megabus, is probably a bit germy for me right now and I don’t have enough energy to drive that far. Leaving the state also means that we’ll be able to go to Pennsylvania to visit family and I can go to Harpers Ferry to say hello to everyone at ATC. In April, my sister will be a model in the American Girl fashion show to benefit Cool Kids Campaign and Sinai Hospital. She was a model last year as well and some of you may have seen her in the ads for it this year! Her fundraising page is all set up so if you’d like to help her reach her goal. I’ve volunteered at the event the past two years and I can’t wait to be there again this year. There’s also still time to sign up to run or volunteer at The Color Run! If you’re looking for a team to join, we’ve got one called Worst Best Thing. It’s amazing how much faster these updates go when I post more often! I’ll be spending the next week finishing up my classes and hanging out with my friends who are coming home from college for spring break but I’ll try to post something next weekend! For those of you who have been wondering if I’ll continue blogging once I’m back at school in the fall and have very infrequent medical updates, the answer is yes! I’ve been brainstorming topics, and if you have anything you think I should blog about, let me know! Thanks for all the thoughts and prayers, and please consider also sending some to my three friends who are inpatient for transplants right now!
1 Comment
irma
3/10/2014 07:00:16 am
Sounds as if things are more regular for you now. Great news. Reading your blogs is fun. Perhaps you might want ro blog about. your "spring thing," whatever that may be.
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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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