It’s been a little over a week since I headed home from Hopkins after my septic shock scare and I’m certainly not as strong as I was before but every day is a little better. I’ve been working every day to rebuild my strength – it’s crazy how fast it disappears when you can’t get out of bed for a few days. I have some resistance band exercises for my arms and I walk laps in my house or out to the mailbox. When I first got home, making it up the two steps into the house was impossible without help but now I don’t have any problem. I still haven’t tried to do a whole flight of stairs or anything, but I made it to the top of the bleachers at both of my brother’s soccer games! We also borrowed a stand from our neighbors that turns a normal bike into a stationary bike, so I’ve been using that occasionally. It makes my knees stiff, I think because of one of my medicines, and the longest I’ve stayed on is 9 minutes but everything is progress. I’ve managed to stay pretty busy despite my limited strength and energy. Last weekend, my boyfriend came to visit which was really nice even though it seemed like I slept for half the weekend. On Saturday night, we went to the Ken Singleton Celebrity Golf Gala to benefit Cool Kids Campaign with my parents. It was so incredibly refreshing to get dressed up and go out and do something I’d been looking forward to for months. I was rather unsteady at that point because I was still getting used to walking with numb feet (and hey, a week prior I had still been in the PICU!) so I spent most of my time sitting but I did get to look at all of the auction items and talk to everyone from the office that I’ve missed so much these past few weeks! The food was absolutely amazing (and so is Phillip for giving me his crabcake in addition to my own), and we all had a great night. On Sunday, the weather was gorgeous so we went to a park for a very slow walk. I took quite a few breaks but it was wonderful to be outside. We had to start my antibiotic ball in the parking lot because we were still at the park when it was time for my afternoon dose. It’s always an adventure! Tuesday night was my last dose, so I finally got the needle out of my chest – yay! This week, I’ve had a few visitors, who always make my day so much better, but I’ve also been able to get out of the house which has been nice. I went to the grocery store with my mom and only sat down to rest twice. We went to our neighbors’ house for dinner one night, I made monkey bread with one of my friends who came home this weekend, and I went to quite a few soccer games. By the time I get home, the season will be over so it was nice to be able to go to a few before I leave. Yesterday, I went to Susie’s game, only to arrive and realize the fields were quite a hike from the parking lot. I made it down the big hill to the field with no problems but my dad drove down to pick me up at the end. I wanted to see how far I could make it up the hill, but it had poured for a lot of the game (don’t worry, I had two jackets and an umbrella so I stayed warm and dry) and my flip-flops were covered in grass and mud and they just wouldn’t stay on my feet. It was frustrating, but I had to remind myself that a week ago I wouldn’t have even been able to walk down to the field without a rest. I also felt much better after a delicious pork barbeque sandwich from a firehouse fundraiser that we passed on the way home! I just realized I’ve unintentionally been mentioning a lot of food, but I’ve got the steroids to thank for that. In the fall, I only took a week at a time so they didn’t have time to build up too much, but a month straight has brought on the chipmunk cheek look and a lot more snacking – garden salsa sun chips have been my food of choice because they’re flavorful even to my dulled taste buds. It seems like all the food just goes to my cheeks though, because all of my clothes are still really baggy after losing so much muscle. It’s not a lack of food though – I went to Chipotle with one of my friends the other day and ate my whole burrito quite easily. Some of you may be thinking “What? You went to Chipotle? Isn’t that germy and against the rules since the food sits out?” I had always assumed that yes, I should avoid places like that, but I overheard one of the doctors telling another patient the other day how the stuff barely sits out for 5 minutes if you go at certain times so it’s actually not a bad choice. Sure enough, they put a fresh bucket of chicken out right before they scooped mine. I didn’t get any lettuce since bagged lettuce is on the list of things to avoid, and I brought my own drink to avoid the dispensers. We ate outside because it was a gorgeous day, and it kept us away from the crowd. Anyway, tonight was my last dose of steroids and I’m so happy! They cause insomnia, which has been much worse some nights than others so I apologize if I woke anyone with my random 4am responses to texts/emails, photo liking sprees and game notifications. Fortunately, the steroids haven’t made me ravenous in the middle of the night like they did when I was little, but I think they have made me more emotional, or maybe I’m just nervous about heading to CHOP. I went to clinic on Monday morning for a spinal tap and my final dose of Vincristine. Everyone was so happy to see me out of the PICU and back outpatient! If you remember from my last post, Vincristine is what has been causing numbness in my hands and feet (neuropathy). I can’t feel the difference between wearing socks or not, or wearing flip-flops or sneakers. I can tell if my mom touches my foot, but I can’t tell if she just tapped it or pinched it. It takes a really long time to register if I touch something hot, and a lot of everyday tasks are significantly harder when I can’t tell how hard I’m gripping something. I’m learning to deal with it though, and the doctors decided not to give me the last dose. Generally, they like to keep induction chemo as intense as possible, but at this point I’m more of a risk to myself if I lose more feeling and I was a unique case because they weren’t counting on this chemo as a cure – it’s a bridge to the t-cells. Considering it takes a few weeks to regain full feeling, I’m quite thankful that they skipped this last dose because that means regaining feeling a week earlier, and not losing any more! Still no sign of feeling yet, but I never got any jaw pain. My joints have been stiff, but not so bad that I can’t walk. You win some, you lose some. My spinal tap went smoothly and I slept most of Monday afternoon. I had expected to go back to clinic sometime this week to check on my counts but everything looked good on Monday so I didn’t need to go back. It was weird that I didn’t get to say goodbye to everyone because I was asleep from the versed for my spinal tap but I’ll be back in 4-6 weeks! Tomorrow marks the beginning of our stay in Philadelphia. My mom and I will be leaving crazy early in the morning because my appointment is at 8:30am. I get four days of outpatient chemo – cyclophosphamide and fludarabine on Monday and Tuesday, and just fludarabine on Wednesday and Thursday. I’ve never had fludarabine before so I’m not sure what to expect. Getting chemo before I get my t-cells back helps reduce the amount of disease the cells will be attacking, which reduces the stress on my organs from all the dying cells. The chemo also kills my healthy cells, which makes room for the t-cells to come in, divide, and do their job. That’s what I remember from meeting with the doctors a while back – there’s probably more that I’m forgetting but you get the idea. As far as I know, I’m free from the hospital for the weekend until Tuesday the 23rd, when I get my cells and the waiting game begins for the fever and flu-like symptoms. They expect blood pressure issues at some point which would send me to the PICU, but these issues would be a result of the new cells rather than an infection. Drexel’s classes start the day before I get my t-cells infused. If you remember a few updates ago when I explained all the potential side effects, you can see where this is a bit of an issue. I have decided to try to take two classes anyway, though I can always change that plan. I’m taking classes with professors I already know, so I’m hoping they’re willing to be flexible for the first two or three weeks because I know I’ll be so bored later this fall without any classes. Everyone at Drexel has been very helpful this term, and getting everything sorted out was much easier than last fall term which was a relief! I didn’t start packing until after 9pm tonight (though I had made a list earlier!) which was a little later than I intended. It went more smoothly than I expected, until I accidentally packed my phone somewhere and had to unpack all my bags to find it. Oops! It was a lot different to pack for CHOP rather than Hopkins. My parents aren’t switching places as often so I had to be more thorough, and we don’t really know what to expect in terms of hospital food options. I also had to consider what I wanted to do in all my free time this week. I’m looking forward to seeing some people from Drexel and hopefully stopping by my first production night in over a year, but my friends are technically on break right now so a lot of people are away. People have been asking about visiting rules, but I’m not really sure about those yet. I’d love to see as many people as possible before I get my cells but my energy level is a bit limiting. Once I’m inpatient, I’ll have a better idea about the rules for visiting there. As long as you’re not sick, you should be fine, but there may be certain visiting hours. I’ll keep everyone posted. That’s about it from me! After two really long updates in a row, it was nice to write a shorter, relatively boring (because boring is better when it comes to medical updates) post. Thank you to everyone for the continued thoughts and prayers and positive vibes as I begin this next stage of treatment. Thank you for the dinners, the games, the insane number of t-shirt orders, and everything else you all have done for my family. It’s going to be a big adjustment to have two of us in Philadelphia for weeks (my poor siblings had to learn how to do laundry) and we really appreciate everyone who is helping to make it easier! As always, I love you guys and I’ll post later this week to let you know how things are going!
12 Comments
Irma Chazotte
9/15/2014 12:37:06 pm
Hey, Karen,
Reply
Uncle Dean
9/18/2014 01:51:41 am
We've been thinking of you a lot. We wish we had seen this before we had to decide between Chipotle and Moe's when we were out shopping - Chipotle wins hands downs. Chipotle's food is only slightly better, but Moe's took at least 3 minutes per customer, and we could not figure out how they could possibly go so slow (we thought we were down south).
Reply
Shannon
9/18/2014 06:25:05 am
I had no idea about drink dispensers... makes sense though! Lettuce too. We've been pulling the garden all week, it's supposed to freeze up here tonight. I have ridiculous amounts of produce stacked all over my kitchen, awaiting processing... all those full mason jars are a very satisfying sight! We've been to soccer games ourselves, even cousin Mason is in pre-k soccer! It's really funny, they have an absolute blast. Of course Madelynn plays at practice too, even if it's off to the side. We love you girl! Hope your feet wake up soon :)
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Karen Shollenberger
9/18/2014 01:25:13 pm
Thanks Aunt Irma!! ❤️
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Karen Shollenberger
9/18/2014 01:27:16 pm
I've never been to Moe's but I've always been happy with Chipotle! The line is usually really long but it moves quickly. Miss you guys!!
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Karen Shollenberger
9/18/2014 01:30:20 pm
Thanks Shannon! They're still asleep but I'm getting more and more used to it. I can't believe it's supposed to freeze there already but I'm glad you got everything picked! Sounds like you'll have a busy few weeks processing everything! Little kids soccer is always so cute, half the time they don't seem to know which net is theirs but they're having fun so who cares. Love you guys!!
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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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