I hope everyone had a great Thanksgiving! The past few weeks have been pretty busy with appointments, but I didn’t have any particularly noteworthy news until this weekend when I got my day 90 test results. I had a day full of appointments recently, starting with immunology. The transplant prep killed any remaining modified CAR-T cells, which were killing my B cells. With healthy B cells, I can finally make my own antibodies again, but my new immune system is only a few months old. Oncology wanted me to stop my antibody infusions for a month, see if my levels dropped too much, and if not, stop the infusions. My prescription was running out so immunology wanted to see me and they said absolutely do not stop the infusions now or any time until flu season is over. In the spring, we can re-evaluate. Hopkins has been talking about starting a CAR-T cell trial, and I really hope oncology and immunology learn to work together for those patients. In my experience, they rarely agree and oncology doesn’t know much about the subcutaneous infusions or why anyone would want to do them instead of monthly IV antibodies in clinic. I’m in a Facebook group with about 100 families in pediatric T-cell trials and most people have happily switched to subcutaneous infusions. After immunology, I went to cardiology because a recent EKG had looked potentially concerning. These depend so much on who is doing them and where they place the leeds, so when cardiology repeated it, everything looked normal again. My right ventricular strain has been on the lower side of normal, and my ECHO that day showed it was a little bit worse and my aortic root is slightly enlarged (though I think I saw a cardiologist for that a few years ago and he said “why are you here?” because it was so minor). These issues are likely caused by chemo I had years ago, either when I was 10 or when I first relapsed in 2013. The tests depend so much on who is doing them because a slightly different click can cause very different calculations, so nothing is too concerning yet and we will continue to follow everything. I’m now on a blood pressure pill which helps one of those issues, even though it was not caused by my blood pressure. I have low blood pressure without the pill, usually 90s/60s or lower, so I eased on to it so I don’t get dizzy every time I stand up. My day 90 bone marrow biopsy and spinal tap were last Tuesday. I’m always nervous as these tests approach, especially because I’ve been a bit tired recently, but the excitement for Thanksgiving was a nice distraction and I think my tiredness is mostly boredom. I’ve finally had a few symptoms of potential graft vs. host disease, which we’ve been hoping for. My eyes have been itchy for almost three weeks now and I’ve had a rash on my chest and my chin. It’s not as much as the team was expecting/hoping for but fingers crossed it’s enough. I got less Versed for my procedure this time, so I was sleepy and don’t remember much, but I wasn’t knocked out until 7pm like last time. After my procedure, I had a skin biopsy of my chest where my rash is. I was asleep for this discussion, but I think they use the biopsy to look for inflammation to determine whether it’s skin GVH. At the time, all I felt was the prick of the numbing stuff, but when that wore off hours later, it hurt more than my hip. The skin biopsy, from what I remember in my Versed haze, is kinda like taking a mini melon baller to get a chunk of skin and then stitching the hole back up. My siblings did not appreciate that description, but it’s all I’ve got. My rash is still itchy but it’s tough to scratch with the stitch in the middle so I can’t wait to get that out tomorrow! There was talk of a lip biopsy to check for gut GVH but I refused that one right before Thanksgiving. I’m not sure if I’ll get it this week. I also had an eye exam that day to see why my eyes have been itchy. I really hate having my eyes touched, so although this post-procedure scheduling was a bit concerning at first, I decided maybe it would be better if I was sedated. The eye clinic is across the hospital, but typical me refused a wheelchair. I wanted to walk, but I was still sleepy and the hospital was bright so I asked my mom if I could close my eyes and hold on to her. Even in my daze, I still wanted to pass the slow walkers in front of us. I thought our wait was pretty quick, but apparently I just slept through our waiting room time. During my exam, I read the letters on the chart perfectly (with my glasses), but when he was trying to look in my eyes, I was not a fan of the lights. I kept pulling my head back until he asked my mom to hold my head in place. Oops. He said my eyes are dry (potential chronic GVH), which can feel dry, painful, or itchy. Mine just feel itchy, and eye drops have been helping. We asked that the results from my bone marrow biopsy wait until after Thanksgiving. I usually want to know ASAP, but we didn’t want any possibility of bad news clouding the holiday. Plus, it was nice not to be anxiously awaiting a call. We finally got the good news on Saturday that I’m still MRD negative/in remission! Yippee! I’m hoping this means my Hickman can come out soon, because I’m so tired of struggling to keep it dry while I shower and my skin could really use a break from the dressing. My mom is tired of flushing it every day, though I taught one of my friends when my mom wasn’t home! I still have my port for access, so I shouldn’t need the Hickman anymore. My next bone marrow biopsy is in February, which is a long time to wait after the monthly reassurance I’ve been getting, but I’m REALLY hoping that my current itchiness is enough GVH to get rid of the leukemia for good. Our family Thanksgiving was in PA this year, outside my 100 day radius. We used to have huge, 40+ person dinners but they’ve gotten smaller as everyone has gotten busier. This year was a pretty big year and it was amazing to see everyone after being stuck in Maryland for so long. My 48 hours in PA were filled with food, family, love, fun snapchat filters, and kittens and it was just the break I needed. We sort of asked permission to leave my 1 hour radius early for Thanksgiving and my team said it was fine. However, it’s unclear whether they really thought it was a good idea or if they just knew we were going to go anyway, and asking permission was more of a formality in case something happened and they got a call from another hospital. I drove the entire 4+ hours (including traffic, it wasn’t that far!) because I was so excited and relieved. Whether I had permission or not, I don’t think I’ve ever been happier with a decision. My uncle was battling a rare liposarcoma and I thought my July visit would be my last. My mom visited frequently throughout the fall and it was so frustrating that I couldn’t join her. Luckily, I was able to visit on Friday before he passed on Sunday. Sometimes rules are meant to be broken. The title of this post is for him: “Each day is a gift – make every day ridiculously amazing.” I’m sure nobody is surprised that I’ve done a few other things on the not recommended list recently. We took advantage of some of the really nice weather and went hiking at Great Falls National Park. It was technically within my radius (59 minutes!), but that time didn’t include traffic or the hike. I was nominated for an Unsung Hero award for my work with Cool Kids Campaign, and I went to the luncheon awards ceremony (with hundreds of people) on National Philanthropy Day November 9th. It was somewhat entertaining when people kept asking me what I did. A lot of the people who won other awards donated a lot of money or did one big project, but I’ve done lots of much smaller projects like designing shirts and banners or editing articles and books. I know these are important, but to me they’re just fun ways to help an organization that has helped me. I went to another large event about a week later, this time a camp fundraiser where I gave a speech about how camp has changed my life. I promised so many people I would make sure someone recorded it, but I was so nervous that I completely forgot. I got a standing ovation which was amazing and I managed to hold back my tears until I was no longer standing in front of 500 people. It was a great event, and thank you to the Youngs for raising so much money for camp! My hair is growing, and finally looks more brown than blond, though it depends a lot on the light. My knees have been better, but my right knee has been hurting for the last week. I finally had the right MRI, but I haven’t heard the results yet. They don’t matter too much because oncology won’t let me have the surgery yet. I’ll keep bothering them about that and about getting my Hickman out. I’ve been staying fairly busy with books, puzzles, camp stuff, and PT until my online classes start in January. In the past few days, we’ve been going through photo albums looking for pictures of Uncle David and they have brought back a lot of great memories. It was amazing to see some of my friends while they were home for Thanksgiving, and I’m really looking forward to Christmas. The holidays felt so rushed last year because I was at NIH until December 22nd, found out my tests were good December 31st, and went back to school January 3rd. This year, I’m trying to see as many lights as possible and spend more than a week at home with our tree.
Thanks, as always, for all your love and support! Also, thank you to everyone who was part of the meal train, and a special shoutout to the Lyons family for ending it with the most memorable meal of all – a taco feast! Please, please, please get your flu shots, if you haven’t already, to help protect those of us who can’t. I’m okay with a cold to rev up my immune system a little, but I had the flu at school two years ago and it was miserable. I’ll keep you updated but at this point, things have calmed down enough that no news is probably good news. Love you all and enjoy the holidays!
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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
April 2022
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