The past few weeks have been pretty busy and life is slowly getting back to normal. I think today is 114, but I think it’s about time to stop counting! The celebration of day 100 was pretty low-key. I wasn’t feeling great but I enjoyed some shrimp pasta and chocolate covered strawberries, which I’m not supposed to eat yet but I believe there are some rules that are meant to be broken. In case you were curious, my last countdown link included two and a half pages of fabulous cat facts. I’ve been enjoying my freedom even more as my immune system continues to get stronger. My friends have been home for spring break during various weeks throughout the month and I’ve gotten to catch up with a lot of people. Back when the weather was nice, (the picture to the right is the current view out my front door) I went for a walk with my friend and her dog, and another friend and I baked brownies, both activities that I hadn’t done in months. I was introduced to the game 2048 this past week, which is unbelievably addicting. There’s an app for it, or you can play online if you want to check it out. If you get addicted, don’t say I didn’t warn you! I got to 2048 the other day though and I’ve definitely been playing less since then. I’ve seen a few teachers and family friends in the past few weeks, plus my boyfriend came to visit. My hair is finally longer than his! We had one day of gorgeous weather and spent an afternoon outside. Within the past few weeks, my dad and both of my siblings have been sick and I’ve been spending time with a lot more people than usual. I ended up with a sore throat and stomach virus. The good news is neither of these came with a fever so I could be sick at home rather than at Hopkins. At one point, I added itchy watery eyes to my list of symptoms – seems like allergies set in too. I’m not sure what there was to be allergic to considering the amount of rain we got that day but I found something. I remember the doctors told me last time that a lot of people have more/stronger allergies after chemo, so I’m thinking it was a new allergy. Other than feeling blah, the biggest down side to being sick was being unable to go to a mini camp reunion. It would have been the perfect way to celebrate day 100 but I know if someone with all my symptoms tried to walk onto the oncology floor while I was inpatient, I would have been extremely annoyed. There was no way I was risking getting all my inpatient friends sick. On the 12th, I went to Hopkins to re-do all the tests to check on my heart and lungs after chemo. They are so not fun and took longer than last time. Fortunately, I didn’t pass out during the lung function test like I thought I might. After all the tests, I headed up to clinic. I was supposed to see one of the fellows but he was taking an exam so they told us we should come back the next day. He had warned us about the exam but since we couldn’t reschedule the other tests, we were hoping someone would see me anyway. One of the residents volunteered, which meant one of the attendings had to see me too, and my normal PA found time to stop by as well even though she was already double-booked. Basically, I ended up seeing everybody when I thought I might not see anybody! That was especially great because we didn’t need to drive back to Hopkins on Thursday. My day 90 bone marrow continued to show “no evidence of patient.” Also, I only need to go to clinic every other week now. It doesn’t sound like this is normal for day 100 but I’ve been fortunate enough to have very few complications so they aren’t too worried and know that I’ll call if I have any concerns. They’ve gone over the symptoms of graft vs host disease so I know what to look for. Yes, it is still possible to get GvHD after day 100. It’s more likely to happen in the first 100 days, but it’s very serious if I get it now. I went back for my appointment this past Wednesday and things looked fine. The tests from my previous appointment showed my lung function actually improved since November but my heart function is down a little – it isn’t squeezing as hard as it used to. However, it’s only a small difference and they just changed the test so my doctors are still trying to find out from the cardiologist if that might have affected the readings. It’s not unusual at all for chemo to affect the heart but it isn’t necessarily permanent damage either. A few years after my first treatment, tests showed my heart function significantly improved since the end of my treatment so like I said, this isn’t anything to worry about, just something to keep an eye on. Also, the test of my iron level showed that it’s above normal but not by much so I won’t need any bloodletting. That was definitely nice to hear! My hair is getting really long – the first day that it was long enough to touch my forehead I kept scratching, thinking there was something on my face. It’s incredibly soft and everyone enjoys petting my head. There are an incredible number of pictures in which someone else’s hand is on my head, but I can’t blame them because it’s so fluffy! I’ve been compared to puppies, kittens, rabbits, and more. If only hair was heavier... My doctors (and parents) are still concerned about my weight – I was getting close to my goal but those stomach viruses didn’t help. I’m still drinking lots of soda, juice and hot chocolate and eating ice cream every night. Last night I even had two bowls! I submitted the last of my assignments for all three classes and finished the term with a 4.0! I really enjoyed having something productive to do with my time. In addition to classes, I’ve spent a lot of time cleaning my room/closet. My college friends don’t seem surprised at all because my dorm was always pretty clean, but my room at home has been a disaster all my life. I’ll post a picture once I’m finished! I finally read the Divergent series, which has been recommended to me multiple times but I haven’t been reading much over the past few months so I never got to it. Hopefully I’ll have more time to read over the upcoming months. Speaking of the next few months, I start co-op on Tuesday! I was accepted for a position a few weeks ago and Drexel finally got all the paperwork figured out this past week. Apparently it was easy to switch my plan of study when I “wasn’t eligible for co-op” but it’s a lot more complicated to switch back. I’m still not sure why they bother to add a step and switch it in the system before the appeals process, but they do. Anyway, I decided something part-time would be most appropriate for my energy level and I’m starting as an intern at Cool Kids Campaign this week! I can’t wait to be even more involved in such a great organization and help other kids with cancer. If you’re interested, it’s not too late to join my family’s team Worst Best Thing for The Color Run in Baltimore in three weeks, or you can volunteer and throw cornstarch at people. It’s a ton of fun to see so many happy people passing by or to make color angels! On Thursday afternoon, I took a giant step in conquering my fear of public speaking and gave a speech at a Leukemia & Lymphoma society event at Towson. When I was asked to speak, I almost said no because I was so terrified, but everyone encouraged me to say yes, and they were projecting 50-75 people. The day before the event, I found out that number increased to over 100. I lost count of how many times I read it my speech out loud in my room and how many different outfits I tried on before finding something that fit and was weather-appropriate. My dad told me to think of the speech as a conversation, and by the middle of my second paragraph, I felt much more comfortable. Even so, I still have no idea if anyone clapped because I was in such a daze when I finished. A lot of people came up to me later though so I’m declaring it a success! While I was at Towson, I got to hang out with a friend that goes there, and I’m looking forward to being in the area more often for my co-op. Things are definitely getting more normal, but I still don’t have my normal energy level and I certainly don’t have a normal immune system yet. I’m trying to avoid as many germy situations as possible and I can’t wait until the end of flu season and warmer weather. I still can’t believe it’s actually snowing right now, on the second to last day of March. Rainy days always bring me down, so I spent a bit of time today looking at pictures from Hawaii to bring some sunshine into my life. Here’s a particularly sunny picture in case anyone else needs a reminder that the sun exists! :)
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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! 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! |
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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