It’s been a crazy two weeks since my last update! I’ll warn you right now: this is a long one. When I last posted, my leukemia level was up to 24%, which meant the plan switched from immune-modulators with limited side effects to re-induction chemo. Before I could start chemo, I needed my t-cells harvested at CHOP (Children’s Hospital of Philadelphia) for the CARt-cell study. Since the study is still a phase 1/2 trial, the insurance needed proof that it has been effective in patients so far. Thanks to my dad, my doctors, and all of the other people working on my case, the approval came through in about a week, which was last Tuesday (July 22). We were all so excited to finally be getting somewhere! The last two weeks have been spent balancing visits to CHOP and Hopkins and all of our summer activities that I’m thankful to feel well enough to participate in! Right after my last update, my family and I went to a family getaway weekend sponsored by the Carol Jean Cancer Foundation/Camp Friendship. None of us were sure what to expect because in previous years it had been a traditional oncology sleepaway camp. However, there were issues with the campsite meeting the special requirements of an oncology camp so plan B was a family weekend at the Hyatt in Cambridge, MD (the giant resort you see when you’re crossing a bridge on the way to Ocean City). It was absolutely beautiful and even though I had my doubts about attending with everything else I have going on, it was an amazing weekend! During the day, the kids would have activities and the parents had free time to go kayaking or to the spa. I was a counselor for 10-12 year old girls and they were perfect! It was nice for the entire family to be around others who understand what we are going through – the patients are definitely not the only ones who need support. It was also great to meet my friends’ parents, who have heard stories about me for years but never met me. In addition, I met a lot of families that I’ve seen around Hopkins but never really knew. It certainly wasn’t a traditional week of camp, but it’s one of those things that you had to be there to understand how special it was. When we left Monday morning, my mom and I went to Hopkins for a quick check-up. My counts looked fine so I wasn’t there for too long. One number was slowly rising, but it wasn’t too concerning. I just need to stay hydrated. On Tuesday, I went to Cool Kids in the morning. While I was there, I got a text and an email that the insurance approved the CAR t-cell study at CHOP! To make my day even better, I picked up my cousin Annabelle at the airport! She hadn’t been to my house in a really long time (8 years maybe?) and we had a nice relaxing week that included a lot of pool time and catching up, plus some cleaning and errands in preparation for the party on Saturday. Facebook and texting can’t compare to spending a few days together and it was a great week. My aunt arrived on Wednesday night and even more family arrived on Thursday and Friday. We cooked and cleaned (my room hasn’t been this organized in a long time) and made a castle cake for my cousin’s birthday on Friday night! On Friday, my dad and I also had to go to CHOP for the day. The t-cell harvesting is a four day procedure. Day 1 included a physical and some lab work, plus a meeting with the interventional radiology people who would be placing a Medcomp line on Day 2. We left our house at 5:00 in the morning, dropped Annabelle off at the airport, and made it to Philadelphia before 8am, which left us just enough time for breakfast at Sabrina’s before my appointment. I took a nap on a couch in the waiting room between appointments because it was such a long day. We got home just in time for dinner and the castle cake. Saturday was the party, and wow, it was a party. I never figured out exactly how many people were here but over the course of the day I’m sure we broke 100 which was pretty impressive considering how last minute it was. I was surrounded by family, family friends, and my friends from middle/high school, college, work and camp. It was unbelievable to have so many people I love in one place all in one day. We had a castle cake contest, me and the newbies vs the experienced cake builders (some have been constructing cakes at my birthday parties since 2000). My team won, though there was a lot of talk that the other team should have won instead. Their cake was very creative and most people thought it should have won, but my team won on presentation/explanation, and both teams had a lot of fun! My cousins also tried to explode a watermelon using rubber bands, which has worked for many people on YouTube but didn’t quite work for us. Speaking of cool things to do with fruits and vegetables, did you know you can make a carrot clarinet? I’ve watched it multiple times now and it still gets me every time. Anyway, back to the party. I certainly didn’t get to talk to everyone as much as I would have liked because that would have taken days but THANK YOU to everyone who came! It was great to see you all and as always we appreciate everything you do for us. Some of us stayed up until after 2am talking; I didn’t want to go to sleep because that meant such a wonderful day would be over. On Sunday, I dropped my friends at their bus/train stops and packed for my few days at CHOP before falling asleep really early because I was so exhausted. We headed to Philly on Monday morning and got stuck in a lot of traffic from an accident/construction but eventually we made it to our appointment. Since I was getting anesthesia, I couldn’t eat after 11pm Sunday night or drink after 9am Monday for my 1pm procedure. It ended up getting delayed 2 hours (hospital time…) and I was absolutely starving. I also had a really mean nurse who was very unsympathetic and just generally not comforting. I don’t like change, and CHOP’s rules regarding the line placement were a little ridiculous to me. I needed to use special wipes on my entire body (specific wipes for specific parts) and I wasn’t allowed to wear my socks or underwear for the surgery, even though they were accessing my neck. I remember wearing my own yoga pants when I got my hickman placed at Hopkins, but I couldn’t even wear my own socks there. The wipes made me itch so I spent the next 2 hours scratching while I waited for surgery. I’m allergic to Tegaderm, which is a kind of dressing that CHOP uses for most lines and I told her about my allergy. She said she’d look it up, and it sounded like if it wasn’t on my allergy list, she was going to ignore it. Good plan…not. The other nurses were very nice but that one just made my tired, hungry, thirsty, itchy self want to cry. When the anesthesiologist came in, he told us he thought he had taken care of me before but we laughed and told him no, this was our first time at CHOP. He asked us if we were from Hopkins, so of course we said yes. Turns out, he took care of me at some point during my first treatment! He thought he recognized my name, and he told me later that once he walked in the room and saw my dad he was positive he’d seen us before. It’s a small world! He was very nice though which was welcome after that nurse. My dad had a really bad migraine and I was sleepy from the anesthesia but eventually we both felt decent enough to go out to dinner. We went to a delicious barbeque place and I made up for the day of not eating before heading over to Drexel. I have to say, it may not be as nice for my family in Philadelphia, but it’s so nice for me to be able to see my school friends while I’m there, instead of them trying to find weekends to come down and visit me. Tuesday was the cell harvesting day! My appointment was at 8:30am, so we were guessing the whole process would be finished by 1 or 2. To keep my cells from clotting in the tubes and the apheresis machine, they gave me heparin and another blood thinner/anti-clot drug. Because of this, they have to wait 4 hours after the end of the cell collection to remove the line. We were hoping to be finished in the early afternoon so there would be time to remove my line that day but no such luck. They didn’t get the machine to start collecting my cells until after1. First, they thought there was a clot in my lines, so they kept flushing them. I could taste the saline for the rest of the day. Since my lines were still too slow for the machine to run, they put TPA in to break up any clots. After that sat for an hour, my lines were working better but then there was a clot somewhere in the machine tubing from when they had briefly started it earlier. They tried repeatedly to flush that out, but the pressure was still too high for the machine and they ended up having to replace all of the tubing. Once they finished that, they tried to hook me up again and my line wasn’t working again. I was starting to panic that the cell harvesting wasn’t going to work but they finally decided to take the dressing off my line so they could move it a little. It turned out that it was probably pressed against my collarbone, which restricted the flow and made the pressures so high that the machine had been shutting down. They propped my line up with a huge stack of gauze and it worked beautifully! When we finally left CHOP around 5:30, I went to hang out with some of my friends from The Triangle before dinner with my dad. We ate on an outside deck with lots of plants, and other than the city skyline, it felt like we weren’t in the city at all because there was no traffic noise and there was so much green. On Wednesday morning, the hotel intercom woke me up with an extremely loud announcement. The power was out, so they were telling everyone that they were aware of the problem and were doing their best to fix it as quickly as possible. They apologize for the inconvenience blah blah blah. Personally, the blaring announcement every half hour starting at 6:30am was more of an inconvenience to my sleeping self than the lack of power, but I guess that wasn’t the case for all the businesspeople staying there. We carried our luggage down to our car from the 15th floor before breakfast so we didn’t need to go back up to get it later. We got to CHOP at 9am, which was early for our 9:30 appointment, and we even went back to a room early, which got our hopes up. Hospital time is killer, though. Our understanding was that they had to take the dressing off, cut the two stitches holding the line in place, and pull it out. I didn’t need any sedation, they would just come into the room and take it out. After sitting there for a little while, they told us they needed to do bloodwork to make sure my platelets were high enough to take a line out of my neck because that’s a pretty bad place to bleed from. They did bloodwork after my cell harvesting less than 18 hours before but apparently that wasn’t good enough. Platelets get stuck in the machine that all my blood went through, so I only had about half as many as I did before the cell harvesting, which is expected. Did they use my line, which wouldn’t have required a needle? Nope, they put an IV in my arm. Good thing my platelets were high enough that I wasn’t bleeding uncontrollably! The results took about an hour to come back. Taking the line out took 10 minutes, five of which were spent applying pressure to the site after the line was removed. We thought we were free to go but once again, nope! There’s yet another step we didn’t know about – I needed a chest xray to make sure the line removal didn’t affect my port line, which was in the same vein. They took the xray, then waited for someone to read it. Luckily it looked fine. I’m not sure what they would have done otherwise, since they couldn’t give me anesthesia with all the food I’d had that morning. We finally left at 1, after a lot more than the 10 minute removal. It was a bit frustrating that we didn’t know about all of those steps beforehand. It seems like they’re pretty standard, so it would have been nice to go in not expecting to leave within an hour or two. If we knew it would be 4 hours, we probably would have taken a lot more in with us to occupy our time. I’m not a big fan of change, and I’m so used to Hopkins that I didn’t like CHOP as much as I expected to. My social worker there was very helpful and didn’t ask me annoying questions like how am I feeling/what am I thinking so she’s a big plus. Most of their staff was nice, except for that one nurse on Monday. Their internet blocks the randomest things – instagram, buzzfeed, etc. but facebook and twitter work just fine, which I found surprising because I see a lot more questionable stuff on facebook than instagram. The “access denied” page lists humor/jokes as a reason to block a page. Apparently they don’t believe in laughter is the best medicine there! Their hospital time is way slower than Hopkins hospital time, at least in my few days of experience. I don’t remember ever waiting 2 hours for a surgery before and I certainly was allowed to keep my underwear on (especially when I’d only been wearing them for the three hours since my shower that morning). Their security desk scans each person’s ID and prints them a visitor badge. As you can imagine, this takes significantly longer than giving each person a visitor bracelet. Their parking garage is one of the most strangely laid out garages I’ve ever been in. It’s a lot to get used to so I’m sure it’ll grow on me but for now I’m thankful that my cells have been harvested to help me beat this cancer for good, and meanwhile I’ve been back home enjoying the rest of my week! Yesterday, I went to the dentist, drove to Annapolis to visit my best friend and go kayaking on the river behind her house, and went out to dinner with two of my favorite people. I also went to a viewing for a friend of mine, who passed away during the party on Saturday while I was in a group with a few of my close camp friends making a castle cake. Looking back, this is perfect in a way because I originally knew him from camp and he loved to celebrate. I’m positive that he would have been all for having a party just to say thank you and making not one but two cakes just because! I went to camp with him for years but didn’t really get to know him or his family until we were both dealing with relapses last fall. Our families had a super bowl party in February when we were both stuck in Baltimore at St. Casimir. I made him a countdown chain for his transplant and I was amazed by the amount of love in those messages and the number of people who submitted notes who had never actually met him but heard his story. In 18 years, he touched so many lives of people that he will never meet, and he truly did live his life to the fullest. Like someone said at the service today, you shouldn’t have to know that you’re dying to start living. Pray more, worry less, live and love freer. Dale, even though I didn’t know you well for very long, those are a few months that I will never forget. Thank you for the camp shirt in the right size, I felt a little under dressed yesterday but I knew there was nothing else I could wear that was more you than your shirt. You’re the only person I know who would think to request steak at your funeral, and I’m glad Outback came through for their most dedicated customer. Rest in peace and, when you get a chance, look for my friend Amanda. Today, my mom made sure my appointment at Hopkins was after the funeral. I needed bloodwork to make sure that my counts still look okay so that I can go to Camp Sunrise. Luckily, everything looked good so I’ll be heading to camp tomorrow morning! There are still no leukemia cells in my blood, and all of my other counts are normal so my bone marrow is still producing enough good cells. We were surprised about this, considering how fast the number jumped from 1.8 to 24%, but my doctor said that the GNKG168 stuff may be helping. We never did any more bone marrow tests after the 24% one a few weeks ago so we don’t really know, but immune-modulators can take some time to work, so it’s possible that the GNKG168 helped some after I stopped taking it and it had time to rev up my immune system. There really isn’t any way to know what exactly is going on, but the point is, all of my bad cells are still confined to my bone marrow and I’m still feeling great! The current plan is for me to attend camp this week and then be admitted to the hospital the following week to start chemo. I signed all the paperwork for the chemo today. It never gets any easier to agree to all of these drugs that have “rare but serious” side effects ranging from coma to blindness to major organ issues. The alternatives (let my leukemia take over or try lots of other experimental therapies) aren’t any better. Luckily, the common side effects look mild comparatively – tiredness, low counts, nausea, etc. Even faced with all this chemo, I’m most dreading Prednisone, which is a steroid. When I had it during my first treatment, my face got all puffy and I woke up at 3am every night absolutely starving. However, steroids can do a lot against leukemia apparently so I’ll take it. What comes after this month? When people ask me that I just laugh and tell them I wish I could answer that. It all depends on how effective this upcoming month of chemo is and when CHOP can give me my t-cells back. This may be my longest update ever but that’s finally about it for tonight! Now that the insurance has approved the CHOP study, we are starting to deal with Drexel. I’m trying to sign up for online classes so we’ll see how it goes! As far as co-op, I’ve been doing as much work for Cool Kids as I can, even when I can’t be in the office so hopefully I can still get credit. I’ll cross that bridge when I get to it. In the meantime, I’m all packed for camp and ready for a great week Under the Sea! I hope you all continue to enjoy your summer as well! If you happen to be in the Columbia, Towson, or White Marsh malls in the next two weeks, check out the Houses of Hope exhibits! My new splatter paint house is in Columbia but a house I made a few years ago is in White Marsh this year. There are a lot of amazing kids represented at every mall; their bios are definitely worth reading! Thank you for all the thoughts and prayers, and I’m sorry it took me two weeks to update you! If you've made it all the way to the end of this update you can tell I’ve been a little busy.
2 Comments
Amanda
8/2/2014 02:39:50 am
Our titanic cake totally should have won...haha love you!
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irma Chazotte
8/3/2014 05:38:20 pm
An amazing journey, Karen. Your recommendations on how live a good life mean so much based on all that you've experienced.
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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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