Hello everyone! I can’t believe it’s already March, which means I went all of February without a blog post, oops. As many of you have heard I am HOME! No more 20 minute radius, but still lots of caution with germs because I don’t have the infection-fighting ability of a normal person yet. Sanitizer and my mask are still good friends of mine. At the end of January, I was extremely nauseous and my doctor was concerned because my weight was continuing the downward trend that began when I was inpatient. I started taking Zofran around the clock, instead of just when I felt nauseous. It works better to stay ahead of the nausea. It took almost a week before I really felt better and was consistently meeting my calorie goals each day. Even so, the downward trend continued so we raised my calorie goal. I have been drinking more caloric beverages instead of water – it’s crazy how fast those calories add up! I now understand how people can lose so much weight by cutting out soda. The first weekend in February, my would’ve-been roommate from Drexel came to visit. I hadn’t seen her since October and she had never been to Maryland , an aquarium, or Outback, so she had a weekend of firsts! It was a much-needed weekend of girl time. We knew one of the other families staying at St. Casimir, so we had a superbowl party, complete with tons of food. I wasn’t feeling very hungry but it was a lot of fun! I got my Hickman line removed during the first week of February. Since I also have a port and haven’t been needing transfusions or IV nutrition, my Hickman was no longer necessary. I told the anesthesiologist that I am very sensitive to anesthesia and would love it if he didn’t give me general anesthesia. I got something lighter and it was perfect! I needed the line removed and also a bone marrow aspirate and a spinal tap. I woke right up at the end and didn’t go back to the apartment and sleep all day like I do after most procedures. However, the operating room rules about eating and drinking beforehand are much stricter than the Versed I take on the 11th floor, and the needles for the bone marrow extraction are bigger so I was sorer after! I really couldn’t complain though because my poor sister had four holes in her hips and I only had one. 72 hours after my Hickman was removed, I was finally allowed to take a real shower without worrying about getting the dressing wet. It was a fantastic feeling! The next week, I had my last spinal tap to put chemo in my spinal fluid. No more chemo! This upcoming week I have another spinal tap and bone marrow aspirate but they are just to make sure everything looks good, not to give me chemo. My last spinal tap didn’t go as smoothly as some of the others but I didn’t get any spinal headaches so I declared it a success! Before my spinal tap, my mom mentioned our willingness to go home anytime, even though it was only day 67. The doctor said definitely not before the big snowstorm that was predicted for the next day. While I was asleep from the Versed, my mom apparently mentioned our willingness to two other doctors as well. When I got back to the apartment, I realized I was getting dizzy when I stood up and throughout the week I had a mild headache like I get when I need blood. When I went to clinic on Friday, I was expecting (and hoping for) a blood transfusion. I’m sure most of you have never gotten one, but you know that energy you lose when you give blood? Imagine being significantly more tired than that and then getting a sudden burst of energy. It’s great, no matter how many people call me a vampire. As much as I love blood transfusions, there are some downsides which are a big part of the reason I didn’t get a transfusion that day. My red blood count was low but it was starting to go up so they knew I’d be fine on my own, even if it took a little bit. In addition, blood transfusions contain lots of iron. Before my transplant, my iron level was already elevated because of the numerous transfusions in the fall (and probably my summer of iron pills, thinking my problem was anemia not leukemia). The transplant and the transfusions I got in the weeks after the test contained lots more iron so my level is even higher now. Little did we know that iron doesn’t really leave your body unless you lose blood. With a normal diet this iron retention is fine, but when you get frequent red blood cell transfusions, there’s potential to have too much, to the point where it can hurt your organs. Once my counts are back up to normal (probably in the summer), if my iron levels are too high they will draw a bunch of blood from me each time I go to clinic…and throw it away. Yes, this is basically bloodletting. Hopefully it won’t be necessary. I’ll find out when they check my iron levels again around day 90 (this week). Instead of blood, they gave me fluids which helped with the dizziness. They also gave me instant energy in another form: exciting news! I got to go home! All the way home, outside the beltway, more than 20 minutes from the hospital, HOME on day 70! This news was absolutely shocking, since we had only starting planting the idea in their heads a few days earlier and didn’t expect it to actually work until around the beginning of March. I think they had already been considering it before we said anything, but we will never know. We only had an hour to pack before we had to leave to get my sister to a basketball game but we filled our car as much as possible and headed home. My room is pretty chilly but I just sat there for a while. It’s so nice to sleep in my own bed and have the family all together. My cats still love me, so that’s good news too. My first dinner home was one of the meals that someone brought us, and it was delicious! I ate so much more that I’d eaten in a while. Now that we’re all back home, my mom cancelled the meal calendar (unfortunately, she did so two days before we were supposed to get crab cakes). We went back to the apartment the next day (Saturday) to officially move out. It didn’t take as long as I expected but it was quite a process. Not only did we have to move our stuff out, which involved carrying our everything across the deck, through two more doors and down a flight of stairs. The deck was recently redone, which was a loud endeavor that often began around 8:30am. My favorite part was when they asked us if our apartment had another entrance for while they were working outside our door. It does not. Anyway, the new deck is nice! I spent the two weeks of the Olympics watching more television than I do in the rest of the year combined and doing my homework mostly during the commercials. My goal was to understand the rules and strategy of curling by the end of the games but unfortunately I was unsuccessful. It was great to be able to watch so much; I was at camp for a lot of the summer Olympics of 2012. We had a family Wii Olympics during the snowstorm. A few weeks ago, my sister insisted that I update my mii to wear a hat instead of having long hair. I wasn’t going to bother changing it because my hair will grow back but I did anyway, and it’s really cute! Drexel has continued to make the logistics of staying on track with college while recovering from a bone marrow transplant difficult. Even though I’m almost a full year ahead in terms of credits, since I was not a full time student the past two terms, I was not eligible for co-op (approximately six months of work experience) and had to appeal, which was due February 1st. Cancer was a reasonable case so after multiple follow-up emails, I learned on February 28th that my co-op has been tentatively reinstated, meaning I have a bunch of paperwork to do in order to make it official, and I’m only left with about a month to find a job. However, I’m incredibly thankful that it was approved so that I can stay on my expected plan of study instead of taking more online classes over the summer. As convenient as online classes are, I remember conversations better than things I read so I get more out of a typical classroom experience. My three classes this term have been keeping me really busy. 10 week quarters fly by. It’s already week 8 and I’m writing this blog post instead of a paper (and this post is probably longer than my paper). In addition to classes and the Olympics (which I miss already – homework was so much more boring this week), I’ve been making a lot of paper chains. I enjoyed mine so much (actually, I still have a few messages left because it’s only day 85) that I decided to make some for the three people I know getting bone marrow transplants. I recently found out another guy I know will be getting a transplant too, so I’ll have a total of four. Please send some positive thoughts and prayers to these families as well, they worked so well for us! Two of my chains have already been delivered and make great additions to my friends’ hospital rooms! I wanted to make sure everyone had more than 100 messages so that they could take an extra one if they were having an extra tough day or something, so thanks to everyone who contributed when I asked for last-minute additions! For anyone who likes to run, walk, skip or do cartwheels for 5 colorful kilometers, join our team for The Color Run in Baltimore on April 19! Our team name is Worst Best Thing. The morning wave is sold out but there’s still space in the afternoon wave! If running isn’t your thing and you’d rather throw cornstarch at people, you can join me as a volunteer. If you don’t want to be involved at all but want to make a donation to Cool Kids Campaign, that’s cool too. With the move back home, my clinic visits decreased to once a week, which is nice since I’m twice as far away now. The doctors decided that if they were going to see acute graft vs. host symptoms, they would have seen them by now. Things looked good, I only had one fever, and that was questionable, and they knew I’d continue to follow (most of) the rules. That doesn’t mean this journey is over, but the return to more normalcy is refreshing. I can drive again and we can have dinner as a family. Last weekend my boyfriend came to visit, and thanks to ROTC we almost have matching hair! With the snow, I got to cross-country ski around my yard which may sound silly to some people but don’t knock it til you’ve tried it! Since I missed our annual ski trip I was ready to be back on my skis. I have a little more energy for this upcoming snowstorm, so maybe I’ll be able to ski on some trails this time. One of my best friends was home from college this weekend and I got to see her and her family and meet her friends from school last night. I’m waiting until after March 16th (the official end of the 100 days) to go out to Harpers Ferry and visit everyone at the Appalachian Trail Conservancy, where my internship last summer was abruptly ended by my diagnosis. I also want to go visit Drexel again but I’m not sure how long I have to wait for that. My hair is approximately 3/8 of an inch long and it’s soft enough that it’s been compared to clouds and bunnies, among other things. I haven’t been charging people that want to pet my head but it’s been suggested a few times. My weight is on a steady upward trend. A few more pounds and my mom will stop bothering me to eat candy and drink soda all the time and I can enjoy a glass of water in peace. I know, I’m weird. Today is the camp reunion which I’m really looking forward to. Coming up this week I have my day 90 bone marrow on Wednesday, along with the spinal tap just to double check my spinal fluid. I also have a lot of routine blood tests and sometime soon I’ll redo all of the tests I did before transplant- pulmonary function, EKG, etc. After that, I won’t have any more bone marrow tests until day 180! Visitors are welcome, as always, as long as you’re not sick! For most of you reading this, home is much closer than Canton and it’s definitely easier to park! Thanks for the continuing love and support!
5 Comments
Allie
3/2/2014 09:02:38 am
I loled at the part about you being weird for not wanting to eat candy all day. So glad to read such a good update!! Continuing to send lots of thoughts and love your way.
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Sandy
3/3/2014 06:31:55 am
Congrats on coming home early, Karen! Glad to hear such good things. Hope you're doing well! Miss ya!
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irma
3/6/2014 04:35:23 pm
Glad you're home. Sounds like the best worst is behind you. Thinking of you and hoping every day issunny and bright. Spring. Is in the air if you breathe in the fresh air.
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10/23/2017 02:47:37 pm
Easily, the article is actually the best topic on this registry related issue. I fit in with your conclusions and will eagerly look forward to your next updates.
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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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