Hi everyone! After such a short post last time, this is sure to be a long one. I have plans with friends in a few hours so I hope I can type fast enough! It’s certainly not my best written post and I hope everything makes sense but I didn’t think it could wait any longer. My extra week back at Drexel was fun but mentally challenging. I was all prepared to leave the original date, probably because I had been so busy catching up on homework after my week home and seeing all of my friends before I left that I didn’t have time to think about it. During my extra week, after I found out the cell modification got delayed, I was all caught up on my work and had already said goodbye to everyone. I saw most of them again, but I had a lot more free time for reality to hit. Luckily, it was big/little reveal week for Gamma Sig which was an exciting distraction and I got to be on campus for the bone marrow drive we organized. It was great to see how many people stopped by to swab their cheeks to see if they’re someone’s match. My ever optimistic self only moved home what I needed for two months and left the rest in my apartment in Philly. I knew Hopkins was suggesting moving forward to transplant but I wasn’t completely convinced. The day after I got home, my dad and I went on a road trip through parts of Virginia, Tennessee and North Carolina. The original goal was to enjoy the fall colors but with my extra week at Drexel, that didn’t quite work out. It was still a beautiful trip though, filled with waterfalls and sunsets and made complete with a visit to Boone to visit my best friend. I’ve tried to visit as many friends at school as possible during their semesters but it was tough to make it down to NC for a weekend so it was great to get a chance to go! When I got back, I spent two days at NIH and the rest catching up on all the homework I neglected during our trip. My first day at NIH was just for neuro-psych testing (my memory is normal – yay!) and labs. I met with a doctor to sign consents for my bone marrow aspiration and spinal tap procedures the next day. I had never met this doctor before, and I was not impressed. I needed an MRI the next day and I asked what that was like because I’d never gotten one. She completely freaked me out, making it sound like I’d be enclosed in a really tiny tube, so I looked like a crazy person when my nurse took me down to the MRI area to show me so I knew what to expect and it turned out only half my body needed to be in it and the tube wasn’t even that tiny. We also argued with her for an absurdly long time about whether I was allowed to eat in the morning if I was using oral Versed for my procedure. I understand that it’s uncommon, but I’ve done it countless times before and I think I know how it works. My MRI went fine the next morning and we ended up hours early for my procedure. At other hospitals, when I’m just using Versed and not waiting for an OR slot, the procedure times are pretty flexible. Not at NIH. My scheduled nurse wasn’t supposed to be there for a few hours so we had to wait. Eventually, they gave me the Versed and took me over to the procedure room. I fell asleep and they realized they couldn’t find the consent form I signed the day before. Versed only lasts for a certain amount of time, and eventually my mom signed a new form since I was “unable to consent” due to the sedation. She told them they had to start or they weren’t doing the procedure because she knew I was starting to wake up. I was awake for most of the procedure and as they finished, someone walked into the room with the original consent form and told them they could start…I was wide awake by that point and am so thankful to have parents who advocate for me.
That weekend, I went to a fundraiser for camp and my family went to our first Raven’s game (thanks Cool Kids)! They won at the last second to keep the game from going into overtime which was a relief because even though it was fun, it was also very cold! The fun weekend was a good distraction from the anxiety of waiting for my bone marrow results. We finally got a call Tuesday night and my bone marrow was up to 70% leukemia. While we expected growth, that was a lot, and a bit surprising considering how much hiking I was able to do the week before. The high number did reassure me that leaving Drexel early to start treatment was the right decision, instead of waiting for CHOP’s trial in January. My first day of chemo prep for the cells was scheduled for the Saturday after Thanksgiving, so we were planning to come home that morning from visiting family. Tuesday night when we were discussing the results, my doctors threw a wrench in that plan because they forgot I didn’t have a line. Since NIH isn’t a real hospital, nobody is around to place them on the weekends so I needed to come home on Friday for the line placement. We were not happy and may have shown up a little late on purpose (but still plenty early for the procedure). The last time I got a PICC line, I had Versed for the placement but this time I was awake for it which was weird but nice not to sleep all day and the local numbing was enough to keep it from hurting. I just felt a little tickle in my vein. Even though we had to leave early on Friday, Thanksgiving was great! I miss our huge family Thanksgivings but even getting half the family together is a lot of fun. After my PICC was placed, I knew I was going to sign admission paperwork to speed things up for my chemo but everyone kept saying I was getting admitted. I had shown up with just my phone and my dad had a few crossword puzzles – neither of us were prepared to spend the night. Finally, someone explained the pass system that is most definitely unique to NIH (and probably one of my favorite things about the place). I was getting admitted, but then they were giving me a pass to go home and come back the next day for chemo. It’s really the strangest thing, but I guess since they don’t have to worry about insurance, they can do what they want. Either way, it worked, though it would have been nice to understand the system before everyone told me I was getting admitted. The three days of prep chemo were pretty uneventful. I spent them writing my final papers for my classes which really impressed the nurses. My doctors continued to offer to write letters to my professors, but I didn’t want to do the work during break later. I got another pass that Tuesday because there was a day off between the chemo and the cell infusion, which was December 2nd (happy birthday Mom)! Some family friends came for lunch that day which was a nice little celebration and a break from my homework. Later in the week, my left arm started swelling up around my PICC line. On Friday, they determined I had a clot and Friday afternoon they decided to pull the line. The doctor who took the line out placed a little clot-busting line and coated my vein with TPA to break it up as well. This clot-busting line didn’t draw blood and was only receiving a slow heparin drip to help with the clot, so I became a pincushion for the next 24 hours while they continued labs every 6 hours. One nurse tried to place an IV in my right arm and she could flush it but it wouldn’t return blood. I wasn’t getting any IV medicines so I really only needed the IV for blood draws. She tried to tell me it was a perfectly good IV and I demanded she take it out since it didn’t fill the one purpose I needed it to. The one highlight of that night was two of my friends coming to visit! I also managed to get my IV pole caught on the towel hooks on the bathroom door, which broke the tube and sent heparin spewing everywhere. We actually got a “never seen that happen before” from the nurse. Between the heparin incident and my pincushion status, I didn’t get to sleep until after midnight, and I also got stuck for 6am labs. Needless to say, I wasn’t thrilled when my nurse came in at 7:30 and woke me up to ask if I was ready to take my pills (probably not if I was asleep?). I told her I needed to eat something first and rolled over to go back to sleep. Instead of leaving them for me like most nurses will do, she told me to call her back when I was ready which was fine. As I’m still clearly trying to sleep, she starts talking to herself about how she rarely fills out the white board (still not positive why she felt a need to do mine) and asks what the date is. It was three days after my cell infusion and I certainly could have figured it out but at that point I didn’t care so I just said I didn’t know and tried to keep sleeping. Turns out that was completely unacceptable and she got all worried about my mental status and started quizzing me on the day of the week and where I am and a bunch of other things. At this point, I am already so fed up and then she noticed my type and screen bracelet on the table. When they think patients may need blood products, they do this blood typing and give you a bracelet that matches the sticker on your sample and you need a new one every three days. The bracelet had snapped off in my sleep, and since nobody had seen it come off me they couldn’t confirm it was mine and they needed to do a new type and screen. She seemed ready to do it right that second, an extra stick, and we said absolutely not and she kept arguing with us about why it was so important. We understood a new test was necessary, but my counts were fine and there was no reason we couldn’t wait until the next scheduled stick. We ended up talking to her manager and the nursing manager for the hospital because things had been going so poorly that morning and luckily I had a new nurse by noon. The clot-busting line eventually returned blood, but there were some miscommunications and it wasn’t really supposed to be used as my main line so it got another clot and stopped returning blood. After the first pincushion night, they found better nurses to do the sticks and they weren’t so bad. On Monday, they took that clot-busting line out and put another one in. They also put a line in a more major vein near my neck. I’m not generally prone to clots, but when you put a good-sized line in a pretty small vein, clots are pretty common. The second clot-busting line was a lot more painful because they used the wire to coat my veins with TPA again. I think since it was the second time in four days, my vein was a lot more sensitive and it was really painful, while the first time it had been more like a tickle. They took the second clot-busting line out after a few hours and eventually the swelling in my arm went down so we assume it worked! There are other ways to get rid of clots, but this doctor has done a lot of research and putting these little lines in can help save the veins, which is important to me since my veins already have so much damage from chemo. Things were pretty uneventful for most of the next week. I continued my papers and waited for the side effects to start. I had a big room, clearly meant for two beds but only had one, and the food at NIH was the best hospital food yet, though one of the chemos destroyed my sense of taste for a while. The dietician brought me lots of good snacks though – oreos, animal crackers, and popsicles – and my brother brought me food when he came to visit too. The day my fever started, I wrote a 5 page paper in the morning and that was the end of my productivity. The next day, the doctors came in for rounds and said they ordered two units of blood. My red count was really low, and my blood pressure was getting low because of it. The typical reaction to low blood pressure after these cells is to give fluids, but giving me three liters of fluid only diluted my blood even more and continued to drop my blood pressure. At this point, the doctors have called the ICU team and I am extremely frustrated because I know I just need the blood. Sure enough, less than halfway through the first unit (when it finally arrived after 1pm…) my blood pressure was returning to normal. After two units, it was completely stable and the ICU doctors didn’t think I needed to move. The oncology team vetoed their opinion and sent me anyway because it was Friday night and things don’t happen very quickly there on the weekends. One nurse told me that NIH really stands for Not In a Hurry. That day was certainly a good example. The ICU wasn’t bad once the nurses realized I didn’t really need to be there. I was hooked up to the constant monitoring, but they let me disconnect myself to go to the bathroom instead of calling them in to do it. Unfortunately, during my time in the ICU, they determined that I had c-diff, which basically results from the antibiotics killing all the good bacteria in my gut and I had terrible diarrhea. They put me on some more antibiotics to get rid of it. I also had really high fevers (104+) and Tylenol alone wasn’t enough to keep them down. I started taking either Tylenol or Trilisate (a nasty tasting liquid similar to motrin but doesn’t affect the platelets) every 3 hours and that kept the fevers low enough that they weren’t dangerous. I was hallucinating when I closed my eyes, but I never saw or heard anything when they were open. Sometimes it was cool to escape into a different world. Some of them were bizarre, like painting lines on the road with a big paintbrush, and others were more like being in a video game. I had one that a swimming pool opened up by my bed and also one that tacos got added to the menu (I was VERY sad to realize that wasn’t real). My memory was also awful and my eye started swelling shut. It was a fun time, but by Sunday, they could no longer find any reason to keep me in the ICU and sent me back to my old room. We determined that the eye swelling might be due to the Trilisate since it started about the same time, and I’ve since taken another dose and my eyes started hurting again so apparently I’ve developed an allergy. I stopped taking that and went back to just Tylenol, which worked fine since my fevers were coming down. After a day back in my old room, they moved me down to the pediatric unit. I had said from the beginning I’d prefer to be there but NIH has a pretty strict cutoff at 18. However, I was the youngest patient on the adult unit and apparently they needed space for some other adults. The pediatric unit was much more colorful and the nurses were nice but I had a much smaller room. By the time I was down there, I was feeling better and getting anxious to get out of there. It was clear that the 16th, the original discharge date they told us, was nowhere near realistic. My doctor said “hopefully by Christmas” and my mom and I completely lost it. Hopkins for Christmas two years ago was one thing because it was expected – this came out of nowhere. I was getting fevers every night for a few hours from 6-9, and they check vitals at 8 so they kept catching it and I was supposed to be fever free for 4 days before they would let me go. As it approached the weekend before Christmas, I was freaking out. They gave me a pass to go get our Christmas tree on Saturday, and another one Sunday which I used to decorate it. Our tree completely takes over our house but it is absolutely beautiful and pictures can’t do it justice. Anyway, they stopped doing vitals at 8 and waited until 10 or midnight, which was either a miraculous coincidence or doctor’s orders, we never asked. Either way, they let me go on Monday! My friends have an annual Christmas party which happened to be Monday night, so I was thrilled with the timing. I needed labs Wednesday, and to avoid going in on Friday (Christmas) or the day after since we were planning to visit family, we also went in on Christmas Eve and altered our plans slightly to come home Sunday in time to go get more labs. They wanted to make sure everything looked okay before my procedures on Monday. I had a migraine that started Christmas night and lasted about three days but that has finally cleared up. Visiting family for Christmas was a lot of fun, though I feel like I’ve hardly been home. I had been getting a lot of platelets but my counts finally seem to be recovering a bit on their own. My ANC is still very low but that’s what hand sanitizer is for, right? On Monday, I had a bone marrow aspiration and biopsy as well as a failed spinal tap. They gave up on the spinal tap before they had stabbed me so many times that I’d end up with a spinal headache, yay! I made sure I didn’t take the Versed until the consent was signed and everything was ready, so the procedure went much better this time. The results are better too – NO SIGNS OF LEUKEMIA! I’M IN REMISSION! Classes start Monday (yes, it’s early, but we finished the week after Thanksgiving). It’ll be a crazy next few days but I’m heading back to Drexel. We are holding off on heading to a second transplant for now. I have great persistence of these T cells and they think that it may be harder for leukemia to function without CD22. I’m only patient 8, the second at this dose level, so they’re really guessing, but I’m not in a rush to put my body through hell again when the success rates are so low. I want to be sure, and I’m not right now. There are some deeper sequencing tests that they can run on my cancer-filled bone marrow and my clear bone marrow to see if there is residual disease that can’t be detected with the flow tests. If those tests show disease is hiding, my decisions might be different, but for now I am heading back to school and can’t wait to see everyone. My schedule is extremely flexible again this term which will make things a lot easier. I’m so thankful for Drexel’s online program. If you need me over the next few days, I’ll be packing, moving and ordering textbooks…starting tomorrow. Thank you all for the love and support and the tons of care packages! I can’t wait to spend tonight with my friends and I hope you all have a wonderful new year’s eve as well. Wishing you all a happy and healthy 2016!
5 Comments
Hi everyone! I am so sorry for the long wait for an update, and this is probably my shortest update ever. I’ve outlined my full post and it’ll be an entertaining read but I just don’t have time right now to tell all the stories and updates that have filled the last few crazy weeks. Between moving home from school, a short vacation, and visiting family for Thanksgiving, I’ve spent nearly all my free time working on finishing up my classes for the term and writing my final papers. I only have one typical exam this term, but the last two weeks of the term included seven papers, counting written exams, so I’ve been typing away in my hospital room. I received my modified CAR t-cells on Wednesday (Dec 2) and once they expand enough in my body, I’ll have intense flu-like symptoms and potential blood pressure or neurologic issues from the cytokine storm. I don’t know when it will hit, so I’ve been rushing to get my work done before then. I’m inpatient at NIH and it’s been quite an experience. It’s only been about a week and I already have some great stories but I promise I won’t forget them! Anyway, I figured it was time for a quick update since people keep asking me what is going on. Plus, today is my second birthday (two years since transplant) and I didn’t think that day should pass without a post, even though it’s short. These past two years have been crazy, but about half the time was spent healthy and that was a wonderful gift. My sister will always be my hero and huge shout out to everyone who has joined the bone marrow registry since then! Thoughts, prayers, messages and jokes are always appreciated! I love you all! Real update coming as soon as possible… |
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
Categories |