After being inpatient last week, this week at home was very refreshing. Unfortunately, over the past few days I found out about multiple other leukemia relapses, not just from camp but also from college. Cancer is everywhere. Going through it once is bad enough, but twice or more is absolutely horrible and relapses often mean bone marrow transplants. I’ve said it before and I’ll say it again: please consider joining the bone marrow registry if you can. You don’t actually donate until you match someone, so you could go your whole life without donating but at least you were on the list just in case. I’m lucky enough to have a sibling match but not everyone does. Visit bethematch.org for more information. On Monday, I finally took advantage of Netflix and started watching Breaking Bad. One of my friends introduced me to it the summer before I left for Drexel, and since then multiple other people have suggested I watch it. For those of you who know the show, yes I have cancer but I will not be starting a meth lab to pay my bills. Chemistry is not my thing. That night, I was soaking my feet in Epsom salt water. I probably didn’t mention in my last post that in addition to my toe being red, my heel was also red. The radiation doctor asked me if I had been wearing high heels (clearly she didn’t know me very well) and I had to admit that no, I actually ran over my heel with my IV pole. By Monday, my toe was pretty much healed but my heel was still pretty red. At one point, I leaned forward, launching my phone from my lap into the water. I grabbed it pretty quickly but I still decided to leave it in a bag of rice overnight. My phone works again, but how many people can say their phone went for a swim because they ran over their heel with an IV pole? Yeah, I’m special. My sister and I both had appointments at Hopkins on Wednesday. She needed a physical and I needed a lot of tests. They needed to make sure my heart and lungs were functioning well enough for the radiation and transplant. Most of the tests were fine, but a few required holding my breath and I thought I was going to pass out. When I got up to clinic, my nurse drew 13 tubes of blood. She had drawn 12 from my sister so I thought I had her beat but it turns out they missed a test so she needs to go back to get one more drawn. The last time she got blood drawn was kind of a disaster, so she was all smiles after this one. She couldn’t believe they got so much blood out of one vein, and she got some good snacks so she was happy. I met with another doctor who I’ve seen around a lot but never really talked to because she takes care of transplant patients. She didn’t give me any antibiotics or frequently ask me if I pooped so I like her already. Actually, it’s more for other reasons but those didn’t hurt. My mom told her about my rapid weight loss since diagnosis (about 12 pounds since the end of August), and I was told to think of food as my medicine. I’m only taking pills on the weekends from now until transplant, so she told me to focus on eating. When I’m full, take at least three more bites. Everyone loses weight during transplant so the doctor said people do better if they have a little more to start with. On Thursday, my dad and I headed into Baltimore to narrow down our living options for my 100 days. My social worker had set up a tour of the Believe in Tomorrow House at St. Casimir. Usually, they only provide housing to patients under 18, but as far as I can tell since they have space and I’m being treated in pediatrics, they made an exception because my social worker gave us a good recommendation. When we got there, we got a tour as if it was definite that we’d be staying there – we saw the specific apartment we’d be in and everything. At first I thought that was strange, but by the end of the tour I was so set on living there that I was glad it was all set up. I’m so excited! We have a two bedroom apartment with two queen beds and two twin beds, so my whole family can easily be there all together. There’s a full kitchen, but the apartment is in Canton so there is also a ton of good food around. In addition, we have the option of going to the dinner every night at the Believe in Tomorrow House at Hopkins, which is about ten minutes away. Hopefully I have a good appetite by then, because the food all sounds great to me now and it’ll be really sad if I don’t want it in a few months. There are seven apartments at St. Casimir which share some common areas such as laundry and a huge dining room and kitchen (though everyone has kitchens in their apartments) so the families can socialize if they want to. There’s also a deck, which probably won’t be used much in January and February, but from the top level there’s a great view of the sunset over the harbor. Prepare for lots of instagrammed sunset photos taken with my technology gloves so my hands don’t freeze. Originally my dad and I had planned to drive by a few more places to see if we wanted tours, but we didn’t even bother because we couldn’t ask for more than what we already had. To summarize all that, we have housing all figured out AND there is plenty of space for visitors! Can’t wait to see some of your smiling faces there! Thank you all so much for your support in my countdown! As of this morning I was up to 38 submissions. My goal is at least 100, so keep them coming! My friends will be putting it together sometime during Thanksgiving week, so you have about a week left to submit something. Thank you, thank you, thank you! I’m getting really excited to read them and have been struggling not to peek. I promise I won’t, but it really is a struggle even though I’ve been at home busy and feeling good so I know they’ll be great motivation when I’m in the hospital. My visitors this week were spread throughout the week. A friend from high school visited on Tuesday, and one of my best friends visited on Saturday. My favorite teacher visited on Thursday with a copy of the school’s magazine which I read in front of the fire the next day (perks of being home!). I loved seeing all the changes, but noticed plenty of things that I worked on years ago that have stayed the same. I miss working on the newspaper and can’t wait to be back at Drexel. Anyway, I explained my need to gain weight and was promised Cinnabon, which she brought this morning. It was heavenly and I feel heavier already. I also spent a lot of time on google hangouts (skype but better) with various friends this week. Technology is great for keeping in touch, especially as flu season picks up and increasing numbers of my friends are sick and can’t visit in person. Eating lots of food has been going pretty well, though I haven’t weighed myself yet so I’m not sure how much progress I’m making. At the grocery store on Friday, my mom let me pick out a bunch of candy from the bulk candy aisle! Yes, I’m a child at heart, so that was really exciting. I also got ingredients for 7 layer dip, though I combined recipes and ended up with 8 layers. I usually only eat meals and don’t snack much but I’ve been making an effort to eat more frequently. I ate almost an entire Cinnabon less than two hours before dinner and still ate dinner. This weekend has been nice and relaxing. I was disappointed to miss the Color Run after having such a blast in the spring, but I didn’t think it was the best environment for me right now. A lot of my friends from camp were there and had one of the color throws dedicated to me and another camper. My siblings both had lots of soccer games but my dad and I found time to teach my sister Yahtzee. I also watched a movie that was set in Hawaii and enjoyed recognizing some of the places, even though half the time they weren’t on the island that the movie implied they were on. My brother was working on a project so he was going through pictures from Hawaii and we relived our vacation. I miss it so much! I’ll be heading to Hopkins tomorrow for my usual bloodwork and also another bone marrow aspirate so they can make sure I’m ready to proceed with the transplant. My MRD number (basically, residual disease) has to be below .01%. If it isn’t, the whole transplant process gets pushed back a month so I can get more chemo to lower my number to .01%. I seem to have a history of being just above their desired mark but I’m really hoping that’s not the case this time. I’m ready to get this whole process over with. We’ll probably find out the results sometime later this week. If everything goes according to plan, I’ll have my hickman catheter placed on November 27th then I’ll be admitted for my long stay on November 29th, better known as Black Friday. I’ll get the transplant on December 6th and will be in the hospital for a few weeks before moving to the apartment. I’m already working on my packing list for that whole adventure and am considering buying a miniature fake Christmas tree if they’re allowed. I already have some mini glittery ornaments that would be perfect on it. If you have any suggestions for my list, let me know! I’ve gotten a lot of texts and facebook messages recently from people I haven’t talked to in a long time, and it continues to amaze me how many people read these posts. Thank you all so much for your never-ending love and support, and I’ll update you again once I get the results of my bone marrow test! If you haven’t posted to my countdown, please do!
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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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