August is a crazy month. It’s the month I was originally diagnosed 11 years ago. It’s also the month I was rediagnosed 2 years ago. It’s hard to believe that was only two years ago because it seems like so much has changed since then. Even crazier is that just last year I started reinduction chemo to keep my disease level low for my CART therapy and tomorrow marks one year since I got such a terrible infection with my weakened immune system that I went into septic shock. The truth is, I’m still recovering from that loss of 10+ pounds of muscle that made it a struggle to even go up the two steps into my house when I was first discharged from the hospital. I still have some work to do, but I was reading this article about sepsis the other day and it reminded me how lucky I am to be alive. It’s amazing to look back on the last year and see how far I’ve come. The Camp Friendship motto, “Be Alive, Celebrate Life,” summarizes this summer pretty well. I’ve been incredibly busy, packing in so many activities that I couldn’t do last summer because they were too germy or I didn't have enough energy or time between appointments. Although I wasn’t able to go to Camp Friendship’s full family weekend this year, I went for half a day and really enjoyed catching up with everyone. I also tried stand-up paddleboarding for the first time and really enjoyed it. I didn’t have much time so I’d love to go again! I also spent a week at Camp Sunrise, once again on activity staff. After being on the planning committee this year, it was even more amazing to see how the week came together. Next year is the 30th year, and I’m hoping I can find a way to be there in some capacity even though I’ll be taking summer classes. Medical staff from Hopkins is there all week, allowing kids to get chemo or transfusions, and I got to see my doctors and get my labs done while I was there. My labs were first thing in the morning and I was really missing my port since it took a stick in each arm and chugging two bottles of water to have any success. My veins aren’t happy if they’re even the slightest bit dehydrated but I know it’s better not to have the port anymore! As I learned from my tests in June, the results are more important than the difficulty of the stick. Everything looked pretty good – my ANC was a little low, but it has been since I received my modified cells. My red count was normal and, best of all, there were no CD19 cells which means I still don’t have B cells and my CART cells are doing their job. This is the test I wait most nervously for because it’s the hardest to predict. My other semi-medical update also came at camp: I got my first bug bites since 2004. Whenever I tell anyone that, they give me a look and comment that I must’ve had quite a memorable bug bite that I can remember the date. That’s not quite the case, but I haven’t had a bug bite since I started treatment. I guess they don’t like the smell of chemo, but I was surprised when my bug-resistance lasted after I finished treatment. Since then, I’ve only had flea bites when my cat got fleas. I’m not sure what changed all of a sudden, but I was covered in bites at camp. I’m so not used to the itchiness and couldn’t keep myself from scratching without anti-itch cream. I was hoping the bugs were just bad there and I’d be fine anywhere else but the past few weeks have proved that was not the case. Oh well, having chemo-free blood is worth it! We didn’t go to Maine for the 4th of July this year and we missed seeing our extended family but it was nice not to have the long drive. Instead, I went to Frederick’s Party in the Park with two of my friends for food, concerts, bathtub races and fireworks and we met Cam! I spent two of the other weekends in July in Ocean City to celebrate some of my friends’ birthdays. I hadn’t been to the beach in a while so it was great to spend so much time there. If any of my nurses/doctors are reading this, I used a LOT of sunscreen and only got burned in 3 tiny spots that I somehow missed. I’m still as pale as usual. July also included my 21st birthday weekend! I went camping for my 16th birthday and I don’t think I’ve been since then so another trip was overdue. Last time, we stayed in a tent and got in trouble for talking too loudly after quiet hours so this time I found us a treehouse cabin where we wouldn’t be disruptive. We were near Harpers Ferry so we also went whitewater tubing – we lost half a dozen pairs of sunglasses plus some hats, shoes and water bottles but we all had a blast! I only joined my family for half of their two-week vacation earlier this month because I had taken a week off from work for camp but I got a great taste of Colorado and absolutely can’t wait to go back! It was beautiful, and the lack of humidity was a huge perk for me! I had to drink a ton of water and it took me a few days to get used to the altitude but I pushed myself and I’m sure my red blood count is plenty high right now! I’ll write a separate post about that trip later so I can share more details and pictures! This past weekend, Susie and I went with some of our neighbors to their house on a river. We had a great time boating, tubing (I only got flipped once) and jetskiing, though I am once again covered in bug bites. My brother moves in to college later this week (where did the time go?!) but summer isn’t quite over for me yet! I still have a few more weeks of my internship thanks to Drexel’s quarter system, though it’s not quite as much fun now that the other interns have returned to school and I‘m back to eating lunch at my desk. I’m also going to visit some of my friends at their schools since they’ve already moved back in and September 5th is The Color Run at night (supporting Cool Kids Campaign again)! There will be a lot of glow in the dark and neon – if you’d like to volunteer with me, let me know! I’ve been doing my weekly antibody infusions and have an appointment coming up to make sure that my dose is keeping my levels where they need to be. My ONE YEAR (since my CART infusion) bone marrow aspirate and biopsy are coming up in two weeks so cue my anxiety and nervousness but I feel great so I’m hoping the results reflect that. I’ll definitely be asking them to use the other hip so it shouldn’t be as painful as my tests were in June. After that, I’ll finally be back at Drexel as a full time student with a normal energy level and I can’t wait! Thanks for all the positive thoughts and prayers that have helped get me to this point!
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Note: I’m posting this on August 20, though it was originally written on June 29th and never got posted. I decided to post what I'd already written and write a new post with my more recent updates.
Hi friends! Time for a quick (or probably not so quick, knowing my updates) update from last week’s appointment! It was certainly not the smoothest of days but in this case the results are most important anyway! The day started off great - the car ride up had less traffic than usual and went by pretty quickly for me since I called into a meeting at work for most of the drive. It was a bit more of an adventure once we got there. My weight was still significantly less than it should be, which is frustrating because I eat all the time. The doctors weren’t too worried as long as I’m eating though. The adventure started when I went to the lab to get my blood drawn. Like I mentioned in my last update, I no longer have my port so they draw from my arm. My veins aren’t great because of all the chemo but they had no problem getting blood. The CART study requires quite a few labs in addition to the standard counts (red cells, white cells, ANC, platelets, etc) so there were 10-15 tubes to fill. With two or three tubes to go, I started to feel dizzy and I asked for some water or juice. I remember telling the lab technician that I couldn’t see anything and the next thing I remember is regaining my vision and realizing I somehow ended up from the chair to the floor. They thought maybe I hadn’t had enough to eat or drink, but I had a normal breakfast and even a snack. They also asked if I had been watching, and yes I had but I’ve never had an issue watching before and I felt fine until they were almost finished. I think my body isn’t used to losing that much blood from an extremity because with my port, they were taking it from a major vein so my body didn’t notice as much. I went right back to a room so I could rest and recover and they started to prep for my bone marrow aspiration and spinal tap. All of my bone marrow aspirations at CHOP have been from the same hip, and when they were feeling for a good spot, I could tell immediately where the past ones had been because my hip was still sensitive. I took my usual Versed but it didn’t hit me as fast because of my snack. I know that it works better on an emptier stomach, but it was almost lunch time so I’d been hungry. Even so, I slept through my spinal tap which went smoothly. The bone marrow was a different story. We should have taken the fact that my hip was still sensitive as a sign to use the other hip! When they do these aspirates, they stick a big needle into my hip to get to the marrow inside. If I’m not completely asleep, this feels like strong pressure. Then they pull some of the marrow out, which is an uncomfortable pain that’s hard to describe (if I’m awake). The Versed wasn’t working as well by this point, so I could feel all of this at the time but I still don’t remember it as much as I would have without it. Since they’ve been using the same hip so often, it hasn’t fully healed and they couldn’t get as much marrow out with each hole so they had to keep repositioning the needle. I know it was much less than my sister went through to donate, but at least she slept through it all! After they had enough samples (they take at least 2x as much as Hopkins because of the study), they did a biopsy. Again, this is for the study so I’m not used to them. An aspiration takes some of the liquid bone marrow but the biopsies take some of the bone with the marrow inside. Now we know, eat less, and use the other hip! That was my roughest procedure in a while, and I was sore for days, but the Versed wore off quickly so I was actually a functional person that evening unlike some days after Versed. Not long after we got home, we got a phone call that the preliminary results looked good, and a few (long, anxiety-filled) days later, we got the official results and everything was clear! There are no signs of leukemia, and no signs of B cells, which is a good sign that the modified T cells are still doing their job. While we were there, my mom asked about the overall success of the study so far. I know she didn’t really want the answer (she prefers the ostrich –stick your head in the sand- method) but my dad did and he wasn’t there to ask himself. So far, 96% of the patients who have gotten the modified cells have gone into remission which is incredible when you realize that for most of these kids, this is a last-hope kind of treatment. Like me, many of them have had transplants already and another one would be too taxing for the body, or their cancer isn’t responding to chemo. About a third of the patients have later relapsed, but that still leaves more than 60% of these kids with few other options in remission. It sounds like the relapses so far have all been within the first 9 months, and this was my 9 month check-up so that’s good news for me but considering my history of winning the lottery, I don’t think I’ll ever be able to hush the worry in the back of my head. My Timehop keeps popping up with last year’s blog posts about the first trial I went through before moving to the CHOP one. This summer is going much better and I’m not scheduled to spend my birthday in the hospital! I’ve packed my summer with lots of things I couldn’t do last summer because they were too germy or I didn’t have enough energy – concerts, hiking, camping, canoeing, and of course working full time! I’m so excited that my supervisor is letting me take time off in August both to volunteer at Camp Sunrise and then join my family for a trip out west, mostly in Colorado. I’ve never been there, so that’s another state to cross off my list! Some family friends came to visit last weekend and I went canoeing with my dad and sister on the flooded rivers after the crazy rain that came through on Saturday! July will be a busy month so I probably won’t be posting very often but if something comes up I’ll be sure to let you know! Thanks for reading, and thank you so much for the continued positive thoughts and prayers! They’ve done a great job! I couldn’t do this without you guys! |
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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