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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I started writing a short update a week ago because I wanted to share my test results, but each appointment brought more news and now it’s a bit longer. There’s good news, but there’s still a long road ahead. I stopped my overnight fluids last Saturday night, and my body had some trouble adjusting. I’ve always been extremely fluid sensitive, getting migraines or dizziness even when I’ve had what most people consider a crazy amount to drink. I woke up Monday morning with a slight headache, but each morning was better as my body got used to no overnight fluids for the first time in weeks. I’m still drinking at least 2.5 liters a day (I was getting at least 3 between drinking and IV before) which is a lot! My app is extremely helpful because it reminds me every hour to get a drink even though I’m not particularly thirsty. Last Monday, I had my day 60 bone marrow aspirate and biopsy, as well as a spinal tap. I do all of my procedures on the floor with Versed (conscious sedation) instead of going to the OR. The past few times, I’ve gotten IV Versed but it didn’t seem to work as well so I asked for oral this time. I got 13mg, more than last time but less than the dose for my weight because I’m always extra sensitive to anything that makes me sleepy. I talked to my nurse for a while and my doctor came in a little before noon and saw me still sitting up. There was a brief conversation about whether I needed more Versed but I told them I was starting to feel sleepy and probably had enough. That’s the last thing I remember until I woke up at 7pm (though I thought it was sometime in the early morning because it was dark). Luckily, my mom knew how I was feeling so she could answer all the questions while I slept through my appointment. As I expected, the Tacro was discontinued, as was the blood pressure medicine I was on because of the Tacro. My heart rate was high so I got some fluids, and it improved (though whether that was really the fluids or my extreme Versed relaxation, who knows). The procedure went smoothly and I didn’t move or say a word. Apparently I refused a wheelchair (not surprised) and said I could walk to the car, which I did but don’t remember at all. I came home, changed into sweats and went to bed, though again, absolutely no recollection of any of that. Even though I slept until 7pm, I was back asleep by 10:30 and slept through the night. I was pretty stiff on Tuesday, and still a little groggy until the evening. After dinner, I was on facetime with my friend when I got a phone call. It took me a little bit to recognize the number as one of my doctors, and once I did I wasn’t sure whether or not I wanted to answer, knowing he must have my test results. I didn’t make a decision quickly enough, so it went to voicemail and he called my house. I heard a cheer from my mom in the living room which told me everything I needed to know – I’m still in MRD negative remission! This was such a relief, especially since I haven’t had signs of GVH. We really appreciated the call that night instead of spending more time wondering about the results. I also found out later in the week that I have normal B cells and should be making my own antibodies for the first time since my modified T cell infusion more than two years ago! I will eventually be able to stop my subcutaneous antibody infusions, but immunology wants to continue to follow me until at least the end of flu season. My Thursday appointment last week was long but it was much more entertaining than Monday. I had PT and my knees have been feeling much better. Even though the problem is still there, having stronger muscles helps take the strain off the bones. My clinic appointment wasn’t technically until 3:30 but we checked in right after PT and got things started. Zaching Against Cancer had a group there doing free manicures and haircuts (not sure how many takers they got for the haircuts in oncology though) so I got a manicure while I waited. My labs looked good and there were only three red blood cells in my urine, which is normal, so the BK virus seems to be behind me for now. My heart rate was high (in the 150s) so I got a bag of fluids and while that was running, I checked out the monthly young adult hangout to get Chick-fil-a. The fluids didn’t do much for the heart rate, so they did an EKG and decided to do a bit of an experiment. First I was supposed to stay horizontal and relax, so I got a pillow and a warm blanket and almost fell asleep in a dark room. My heart rate dropped significantly. After a few minutes sitting, it was a bit higher, and after standing for a while it was almost back where it started. Then they sent me up and down a flight of stairs, which surprisingly didn’t increase it much (and luckily didn’t bother my knees). I have an appointment with cardiology next week. My heart rate has been elevated for a while and I’m off the medications that might’ve been causing it so now they want to know why it hasn’t come back down. Maybe it’s the anxiety from waiting for GVH or the relapse they seemed so certain of if I didn’t get any? I’m supposed to try to eat more salt, but I don’t eat a ton of salty food or snacks so I might have to get creative. Even though I’m still in remission, which is absolutely great news, it is unlikely to be a deep, lasting remission unless I get some graft vs. host disease and the graft vs. (any residual) leukemia effect. I just stopped my immune suppression last week, and it is unpredictable to begin with, so I could see signs in a week, or a month, or a year… Hopefully sooner rather than later. There are a few things they could do to stimulate it, but these things would stimulate it to the point where it is very difficult to control and nobody wants that. So for now, we wait. I’ve had some diarrhea, really dry skin, and itchy eyes, which could all be signs of a little GVH but nothing definitive or as severe as the doctors are hoping for. For the most part, I’m doing okay with being stuck at home. I love my family, Clyde is great to have around, the food is delicious, fall is beautiful, and I’m decently busy during the week. Plus, my friends are in class or at work so a relaxing day doesn’t seem too bad. Weekends are a lot harder and Halloween was definitely one of the hardest yet. The last Halloween that wasn’t during treatment for me was 2012, and even that wasn’t great because there was a huge storm. This weekend, social media was a constant reminder that everyone was either outside my radius or in places too crowded for me to go. Which is completely normal for 22-year-olds, but one of the first times I’ve felt this wider radius was extremely limiting. I’ve been able to go most places I wanted to, except for my sister’s soccer games in Virginia. Yes, my family enjoys having me home, but they’d much rather have me at school where I belong, and I’m anxious to get back. I didn’t actually ask but I doubt I’d be allowed to go in person for winter term. Everyone knows people come to class sick because professors require doctors notes for missing class and nobody except oncology patients go to the doctor for a fever. I can’t get my immunizations, including my flu shot, until six months, which is the end of February. I’m signed up for online classes for winter term so that’s something to look forward to, and once my 100 days are up I should at least be able to visit people. My grandparents visited over the weekend which was nice. Their dog walks were longer and faster than I thought I could handle but I got to spend some time outside at Susie’s soccer game. I got lunch with some friends and also carved my first pumpkin – ever! I’ve watched Susie in years past but this year I carved my own. However, I didn’t leave it on the porch or anything because that would be a waste of perfectly good pumpkin. It’s already been cooked and some of it baked into pumpkin bread. I finally had my orthopedic appointment Wednesday morning. My knee doesn’t hurt at all most days, but the problems with my bones are still there. I have a few friends who have also dealt with avascular necrosis (also known as osteonecrosis – bone death) and had to go to Sinai for treatment because Hopkins wasn’t helpful. I did a lot of research yesterday on the surgery they told me about so that I was prepared for my appointment. Luckily, I had a much better experience than they did. The doctor ordered some xrays of my hips and knees because we know my knees are an issue and it’s common for the hips to be an issue. My hips looked fine and I’ve never had pain there but I appreciated that he was being proactive. After looking through everything, the surgery my friends recommended was the first thing the doctor suggested. He pulled up an MRI image and it was clear even to me that the bones didn’t look right. I didn’t take a picture, but I’ll try to include it in a future update. Basically, a lot of the end of both my femur and tibia, where they come together at the knee, is dead instead of alive. One part has even gotten to the point where it is structurally unsound. Core decompression surgery involves drilling small holes which help relieve pressure and also provide a place for new blood vessels to form and new bone to graft. They would put bone graft in to help the process along, and they would help stabilize the part that is closest to collapsing. This surgery can help slow the disease, and even though I’ll almost definitely need both knees replaced at some point in my life, this will hopefully delay that. I need to get an MRI of my right knee, which is also affected even though it hasn’t been as painful, and I will probably need the core decompression surgery in both knees sooner rather than later. Unfortunately, even though the holes they drill are small, certain movements could lead to fractures until they heal so I would be on crutches for six weeks per surgery, almost three months total. The orthopedist asked about my school plans and I said I’m on a medical leave right now but signed up for classes in January. He said we could do one of my knees soon and I’d be off crutches in time to go back to school. However, I’m signed up for classes online and I really don’t think oncology is going to let me anywhere near school until six months post-transplant when I can get my immunizations. My preference would be to get them both out of the way, avoid flu season on campus, keep myself busy with online classes, and avoid needing to do the surgery during another time of year when I want to spend more time active and outside. Unfortunately, oncology has different ideas. They don’t want me to have surgery on either knee until 6 months post-transplant (end of February). I mentioned that spring quarter starts April 3rd and I would really like them both done by then but I know the oncology issues come first and I understand their reasons. If I get severe GVH like we are hoping, it is treated with steroids which first of all could make the AVN worse but also suppress my immune system and interfere with healing after surgery. Also, depending on the cause of my high heart rate, I also may not be able to get full anesthesia until that is resolved. I feel great, my hair is starting to grow back (still unsure about the color though), my labs are almost normal, so overall, things are going well and I’m thankful for that every day. I know too many people who haven’t been so lucky. Thank you all for the love, encouragement, and entertainment as I (not so) patiently wait for my immune system to be able to handle everything I want to do. Clyde and I love visitors as long as you’re not sick! Don’t forget to get your flu shots! |
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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