The last two weeks have flown by. The roller coaster continues, this time starting pretty high with camp and good test results before a lot of ups and downs and confusion. Luckily, everything is sorted out now, and today we start my 100 day countdown with day -6! Before I share my updates, I should share that the New York Times article I mentioned in a previous update was finally published! It’s a long but interesting read featuring a photo of me and Clyde! If you’re interested, here’s the link! I wrote my last update on a Friday after I had been in clinic. My hemoglobin was 8.6, which isn’t awful, but is pretty low for me. I’ve been dizzy and needed blood transfusions in the past around 9, but I wasn’t having any symptoms that day. On Saturday morning, I was packing for camp and realized how tired I was. Walking back and forth across the house gathering last minute items was exhausting (and our house isn’t that big)! My mom asked if I wanted to go to the emergency room to get blood, and I considered it briefly but really didn’t want to spend all day Saturday in the ER when I could be at camp. I knew I could get a transfusion at camp on Monday so I decided to wait. My mouth sores were still pretty painful (though not as bad as last time) so I waited until after I ate a nice soft lunch at home to go to camp. I probably should have taken a nap too, but I didn’t. It was great to see everyone, and luckily dinner was soft enough to eat without pain. The first night of camp was the night of the Ellicott City flooding, and the rain didn’t miss camp either. I went shopping for last minute supplies with the activities director, and we got a phone call asking us to stop at Home Depot for some sandbags. After running through the river of the parking lot, we found sandbags and realized they weigh 60 pounds. She’s very pregnant and I was exhausted – we were probably the two worst people for this particular errand but luckily the employees were great and loaded a dozen sandbags for us. The road back to camp was flooded so I found a detour, and thankfully the rest of the night was uneventful. In past years, I’ve slept in the trailers, but this year, I got the extra bed with the medical director. They were taking no chances with me! It worked out well though, because I had the weakest immune system I’ve ever had at camp and this was the first year I didn’t come home with a cough or cold. Also, with only four people in our cabin, my naps were much less likely to get interrupted than in the trailers with six or seven. The campers arrived on Sunday, but I was taking my first of three naps for the day. All day long, people were commenting on how pale I looked, and by the evening, I had a really bad headache. I rarely drink caffeine, but after multiple cups of soda and lots of ice packs, I felt much better. Normal camp activities started Monday. I woke up early for a blood draw, which showed my hemoglobin was still 8.6 but everything else was dropping and I was having symptoms so they ordered a transfusion this time. Even though my activity is inside and easy to run, the morning was extremely draining. After the opening ceremonies for our Camp Sunrise Olympics, I went to the “funny farm” (our medical building) for my blood transfusion. Each unit took about two hours, so I spent quite a bit of time with the medical staff. The timing worked out that I could grab dinner between the two units of blood. Even though the weekend was a little rough, I’m glad I waited because there is no hospital time at camp. While I waited for the lab results and the blood to arrive, I could continue enjoying my day. It was also more interesting to talk to the medical staff than to sit in clinic and play games on my phone. This is the first year I’ve really needed anything from the funny farm, but spending so much time there gave me even more appreciation for camp and how well they can take care of kids on active treatment and let them have a fun week no matter how sick they are. The rest of the week was much better, and the exhausted counselors started jokingly asking for some O positive after they saw how much more energy I had. I think my nap count for the first few days exceeded the rest of the week combined. They did labs again on Wednesday and my platelets were low enough to stop my chemo pills but not low enough to transfuse. I was fine with holding the chemo because it’s supposed to be taken at least an hour after eating food. With dinner at 5:15, I always wanted a nighttime snack. The instructions from the pharmacy say to take with or without food, but the doctors insist it gets absorbed better without food, and I want it to work. The week was really busy but everyone made sure I rested when I needed to. I had so much fun and I am incredibly grateful that I got to go after all. On the last day of camp, we had the 30 year reunion. I only stayed for a few hours but it was enough time to see a lot of people I haven’t seen in years. I held my friend’s baby for a while, and he really liked playing with my hair. It’s been thinning again, and I think he may be the reason behind one small bald spot on the side of my head. It’s easy to cover though and I didn’t notice it for days. After a quick jump start for my dead car battery, I finally headed home from camp. I took a nap before going out to dinner with friends before one of them left the next day. On Sunday, I had brunch before another friend left. My friends have all these amazing opportunities ahead of them and as hard as it is to see them all leave, I’m so excited for them and can’t wait until I can visit all their new cities! On Monday, I had a bone marrow aspirate in the morning and an echocardiogram in the afternoon. I usually hate ECHOs because they can be somewhat painful, but this one was what an ECHO should feel like. She told me they shouldn’t need to press hard enough for it to hurt, and hopefully she will be there next time I need one done! On Tuesday, I woke up from a nap to find a good news voicemail – I’m MRD negative/in remission! That was the green light we needed to do all the pre-transplant tests. I thought everything would be smooth sailing once I was in remission, but the last week has been anything but. My first transplant was almost three years ago, so I know I don’t remember everything perfectly. However, I remember it well enough to know it was not this much of a last-minute scramble. I can’t even write this day-by-day because things changed so often. Instead of having a schedule of appointments laid out for me and Matt last week, we would sometimes get a day at a time. It was somewhat difficult to fully take advantage of my last week at home when I wouldn’t know my schedule until the night before. One day, Matt came with us to have his consent meeting, but when we got to clinic they couldn’t do it because they weren’t sure yet which harvesting method they wanted to use (and this was the first we had even heard that they were considering peripheral stem cells instead of marrow). Another day, we had to turn around after we were on our way to Hopkins because they called and said Matt needed to come that day as well, only to get there and find that all he was just getting was a physical, which seems like it could have been any day. Everything has been so last minute, and even the transplant date got switched to the 29th, then the 22nd or 23rd, then back to the 25th. The coordinator mentioned that I’d be getting some of my prep in clinic, which didn’t make any sense to me because nobody told me that my prep regimen got switched to reduced intensity. There was a total body irradiation appointment in my schedule, and I was under the impression that I could not get any more radiation because I got such a high dose last time. Basically, nobody seemed to be on the same page, or at least not sharing any of it with me, and I was extremely upset and frustrated. It was really hard to have faith that this will work when the people in charge of making a plan couldn’t seem to agree on one. I was so upset and terrified that I started looking for the advanced directive forms. I know they’re something I should have filled out anyway, but that was the first time I ever felt like they were really necessary. At this point in my life, I’ve gotten used to some unpredictability, but not having a clue about my schedule when I had less than two weeks left at home before my 100 days begin was awful. Unlike last time, I don’t think these 100 days will be filled with trips to the aquarium and other fun outings. Based on our previous transplant discussion with the doctors when I first relapsed, I thought we would be using Matt’s bone marrow and doing a full-intensity prep regimen. My parents and I got the impression that we were using as little chemo to get me into remission as possible so that my body could handle a full prep, which, from the meeting, sounded more effective. Imagine my surprise and terror when I realized they had me scheduled for reduced-intensity prep. Apparently, they said from the start that if I could get into remission with one cycle of chemo, they would consider doing a reduced intensity prep because my disease is responsive and they’re not relying on the chemo as the cure. Instead, they want to ensure a lot of graft-vs-leukemia effect, which means a lot of graft-vs-host disease for me. They’re using peripheral blood stem cells instead of bone marrow from Matt because that creates more of an immune response. In first transplants, they try to reduce GVHD because it can get out of control. Now, they’re counting on it to kill all of the residual leukemia. I guess this is Matt’s chance to attack me for any of the times I was an annoying big sister. I signed the consents on Monday, and the next three months sound like they will be pretty awful. When my friends were making my countdown chain, I said to leave any extras over the 100 for any bad days. One of them asked how many bad days I was planning on having. I don’t plan on them, but I knew this transplant will be rougher than last time. We ended up with enough chain links for two per day, which will be nice, especially on the tougher days. GVHD is graded from 0-4, and they want me to get to 2.5 or 3. Think head to toe red itchy rash, potentially blistering, while having liters of diarrhea per day. Sounds like fun, doesn’t it? There’s more, but I’ll spare you the details until I actually have to deal with them because it was a pretty overwhelming list of possibilities. And that’s only acute GVHD; there’s also chronic, which is longer-lasting and can impact basically every organ system/quality of life. I’ve done pretty well with quality of life stuff up to this point, my side effects have always gotten better, so that could be one of the more difficult things to deal with later. Over the last two weeks, I’ve had a lot of appointments to get the pre-transplant tests done – ECHO, pulmonary function, and tons of bloodwork. It was really frustrating that I received my schedule so last minute but I still managed to fit a lot of fun things into my last two weeks at home. My dad was working in Camden one day, so I drove up with him and spent the day in Philly. I ran around all day catching up with people. It was really hot, but so great to be back, even if it was less than 24 hours. One of my friends convinced me to get the Pokemon app so I would have something to do in the hospital while I walk laps. It has been entertaining even though I have no clue what I’m doing. The Inner Harbor by the aquarium is a goldmine if anyone is looking! Last week, Justin Berk did his annual trek across Maryland to raise money for Cool Kids Campaign. Each day is in honor of a different kid, and Thursday was my day! To make it extra special, one of our close family friends walked and biked with him that day (and has a team that was with him all week). The trekkers stopped at the State House in Annapolis to meet with Governor Hogan and my whole family met them there. There’s a little museum on one of the floors and you can see where the senate and the house meet. It was a pretty cool experience! That night, we went to the Ravens’ first preseason game. The last Ravens game we went to was absolutely freezing, so this was the complete opposite. It was a good game, but the loudest cheers absolutely came when they stopped the game to broadcast the Olympics and Michael Phelps winning another gold medal. Gotta love the Maryland pride! Over the weekend, I went back up to Philadelphia, this time with Matt. We didn’t think I had enough energy to make the drive alone, and I definitely couldn’t move out by myself. I had concert tickets with some of my friends so it was perfect timing. Matt came with us and the show was a lot of fun! When we got home, some of our extended family was here to visit and it was great to see them. This week, I finished cleaning my room (a much bigger project than I intended it to be), had a few appointments, and luckily squeezed some fun in as well. I finally went to Monster Mini Golf which is how glow in the dark mini golf should be (sorry not sorry Talk of the Town), and went to King and Queens Seat and Kilgore Falls during my last afternoon outside the 15 minute radius of the hospital, followed by tacos for dinner (of course).
Yesterday, I had an appointment to meet with the radiation doctors and get my measurements. My first clinic nurse works in radiation oncology now, so we also got to see her! I’m only getting 1/6 of the dose I got last time, so they didn’t need to make lung blocks or anything. Last time, I had blue outlines of my lungs drawn on me for a while, but this time is much easier. I’m just hoping the machine doesn’t break mid-radiation this time! Because the lung blocks take so long to set up, last time they made me stay completely still while someone came in and fixed the machine. I was facing the wall, so there were just a lot of weird noises behind me. Today, I’m having my Hickman placed, so this blog update is a perfect excuse to hide in my room because I’m not allowed to eat. I specifically asked for my procedure to be done with conscious sedation so I’d be able to eat, but Interventional Radiology doesn’t know how sensitive I am and protocol says no food in case they need to use full anesthesia. I’m really not happy about it, especially because it’s my last morning home before the prep chemo starts and food will taste like cardboard. My procedure isn’t until 12:30, which means more than 12 hours without food when I don’t usually go more than 4. I start the chemo prep this afternoon, and will get chemo each day until Tuesday. I’ll get radiation on Wednesday and my transplant will be Thursday. Matt will be giving himself GCSF shots each day leading up to it to stimulate his bone marrow to make lots of stem cells. Instead of needles in the hips like Susie had, they will take the blood out of one arm, send it through the apheresis machine to get what they need, and give the rest back to him. It’ll take a few hours, but doesn’t require anesthesia and he won’t be sore after. Then we sit and wait a few weeks for the cells to engraft, which is quicker with this method. Then we’ll wait again for signs of GVHD, which is what we really need. The perk of reduced intensity chemo prep is that it should have fewer side effects. They don’t expect tons of mouth sores like they expected last time, so I’m hoping to avoid a feeding tube again, even though everything will taste like cardboard for a while. As far as staying entertained in the hospital, I don’t really have a game plan but I do have a long list of recommended shows and movies to watch. I am signed up for fall classes but I doubt I’ll be keeping them, unfortunately. One of my friends just got a kitten and I’ve been enjoying kitten snapchats. I’ve also really been enjoying the Olympics and I’m sad they’re almost over, but I may watch some of the stuff I missed if I can find it online. I know some of my countdown rings have things to watch or do, and I also want to plan the ultimate summer road trip. The next three months are not going to be easy. If I want this to work, my only hope is that they’re the most miserable months of any of my treatments I’ve ever had. That’s not a fun thing to hope for, and I know there’s a very fine line between killing the cancer and killing the patient. Thank you to everyone who has kept my spirits up with your cards and messages or sent good thoughts my way! I can’t wait to read your countdown entries, starting today with day -6! Let’s get this over with!
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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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