I know I missed my usual Sunday night post, but in this case, no news was good news! I was busy enjoying my last week at home and I got more good news as well! On Wednesday, we got a call from my transplant coordinator. Since my MRD is zero, I don’t need as much chemo as they originally thought! I was supposed to be admitted on Friday (the 29th) for two days of one chemo and two days of another chemo, followed by three days of radiation. Now, I only need the second chemo so I don’t need to go in until Sunday! Two fewer days in the hospital, two fewer days of feeling awful, and best of all, two more days at home with my friends and family. Even better news: the medicine I don’t need is the terrible shower medicine that burns the skin if you don’t shower every 6 hours! Sometimes my counts cooperate. In addition to the good news, I had a wonderful visit with another one of my teachers that afternoon. On Thursday, one of my friends showed up with lots of goodies, the most notable of which were a game relating to deer (did you know reindeer are the only species of deer where the females have antlers?) and A CHRISTMAS TREE! It’s about 3 feet tall and artificial and perfect for the hospital! Apparently it has to be approved once it gets there, but I think (hope) it will pass inspections! I already have some mini glass balls that I’ll definitely be taking to decorate it. I realized I won’t be able to help pick out our real tree this year, but since I won’t be home to see it, it’s probably better that way. One less opinion can only make the decision process easier! Friday was a relaxing day. I spent the morning with my mom and her friends. In the afternoon I worked on my thank you notes (I like writing the notes, I just wish they’d mail themselves!) and went grocery shopping. We could get a free turkey up to 20 pounds, so of course we got the biggest one we could find even though we’re only having 7 people for Thanksgiving. I’m not a big fan of turkey, so I guess everyone else is going to be eating a lot! Saturday was my sister’s birthday and I was very thankful to be home for it. Before the fertility delays I thought I’d already be inpatient. It was a great birthday for her, between our presents for her and all the other generous gifts from friends and family. She’s been making lots of bracelets, building treehouses with legos, and playing lots of games on her iPad mini (so “we match”). I showed her how to get emojis and I’m excited to be able to message or Facetime her when I’m in the hospital, plus we’ve been playing Scramble and Words with Friends. My aunt and uncle came down and we made a castle cake (smaller than usual but still fun), which is already almost gone. For those of you who don’t know, castle cakes are a family tradition. At our big family gatherings like 4th of July and Thanksgiving, we always make one and I’ve been making them with my friends at my birthday parties since I turned 6. I don’t remember that, but I just found photos a few weeks ago. The best part was that so many of the people in the pictures are still my friends today. Even though not all of us have always gone to the same school, we’ve stayed friends. I’ve made some great friends at college, but I don’t think I’m ever going to lose all the friends from home who have been here for me through cancer twice now. On Sunday, we went shopping to get Christmas gifts for the cousins. I felt pretty good, but we still took a break in the middle of the day for a nap. It was really nice to get out and do something normal, plus we picked out some decorations for my room! In addition to the tree, I now have some wintery/Christmasy window clings and a few other things. Don’t worry, there will be lots of pictures! Today, I headed to Hopkins for a clinic visit, my transplant consultation and total body irradiation simulation. Eating lots of food has been helping- I’m getting closer to my original weight! We had half of my transplant consultation then had to go to my radiology appointment. I had to stay still the whole time while they measured every part of me so I can get the right amount of radiation. A few people have asked me what radiation actually is. The simplest explanation is a really strong x-ray that kills fast-dividing cells. I’ll be getting 6 doses of radiation total, but since it can be damaging to the lungs, they block it from getting to the lungs during three of the doses. They did a bunch of chest x-rays so they can properly block off my lungs when it comes time. The room was absolutely freezing and I couldn’t have a blanket during the measurements. Everyone else in the room had on long pants and long sleeves and I had a hospital gown that tied in the back. I headed back up to the clinic, wearing my dad’s jacket to warm me up. They were filming a video to play at a fundraiser game for The V Foundation (because of Jim Valvano, whose name meant nothing to me but he was a coach for N.C State). My dad and I might be in the video, which would air on ESPN around Christmas! During my consultation, my doctor explained the results from all of the tests I had last week. The coolest one, in my opinion, is that my blood type is currently A positive. My sister’s blood is O positive. Once her marrow starts producing cells in me, my blood type will change! Cool, huh? Also, we both tested negative for two viruses that most people have. The doctor was surprised that I’m still negative at age 19, but it’s good that my sister and I match. My organs are all functioning, I’m not pregnant (duh), and the levels of everything in my blood are good. He said not to stress my kidneys between now and transplant, and signals are a little slower getting to one side of my heart than the other, but it isn’t cause for concern. The only bad thing he saw in my results was my weight, which was over 15 pounds below the expected weight for my height. The data was from a week and a half ago, so he was happy to hear that I’ve gained weight since then. Yay food! He also said that eating even if I don’t want to and walking around even if I feel terrible will help me overall during my time in the hospital. Knowing it will actually really help might make those activities more appealing. Then again, maybe not. At the end of the meeting, he actually asked if I was excited. I wouldn't say excited, but I'm definitely anxious to get this all over with and get back to my normal life. Tomorrow will probably be my last day of feeling great for a while and it’ll probably be spent starting my packing (or at least the list) and grocery shopping for Thanksgiving. A small Thanksgiving at home with only 7 people won’t be anything like Maine with 30+ but I’m looking forward to it anyway. It’ll also be nice to be in MD to see my friends while they’re home for a few days. On Wednesday morning, I get my hickman line placed. The surgery only requires conscious sedation instead of general anesthesia so I’m hoping it isn’t as painful as the port surgery. Thursday I’ll be eating lots and food and Friday I’ll be thankful that I’m still home not in the hospital showering every six hours. Basically, the rest of this week will be spent enjoying home, food, and my time with friends and family. I may be sick but there’s a lot to be thankful for this year, including my good counts, a sibling match, science, and my wonderful support system. People continue to amaze me every day. Last night, I had 74 countdown submissions, but I woke up to 102 this morning after posting about it on Facebook last night. The internet is a wonderful thing! As I’m writing this, I’m up to 111 which beats my goal! Another fun number: the document I type these updates in before I post them is already over 30 pages long. Anyway, if you haven’t submitted to the countdown yet and want to, you have until Tuesday (tomorrow) night because my friends will be putting it together on Wednesday! I’m SO excited to read what you all have written and thank you thank you thank you for helping me out! In addition to countdown posts, my family and I have received a lot of generous gifts this week, some from people I hardly know or have never even met. A friend from high school asked what organizations have helped me the most so she can donate money. The generosity and support from everyone in my life, especially in this area, is astounding. I loved Philly last year and can’t wait to go back, but I’ll always miss the people here – everyone there always seems to be in a rush. Have a wonderful Thanksgiving and/or Hanukkah week! I’ll update you sometime next week during my transplant prep. As always, I can’t thank you all enough for your support!
1 Comment
Marcella Ruland
11/26/2013 12:53:44 am
Wonderful news!!!!!
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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
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