Whew! This is a long one. If you don’t have time for the long version- cycle 1 was a bit rough, but we got through! Cycle 2 is scheduled for Monday Feb 24.
I started the clinical trial early in the morning on Feb 3rd. I was a little nervous but felt ok. The first thing the research team did was bloodwork, and my white blood cell counts were very high. Higher even than when I’ve had Covid. Weird. So that set off a string of additional tests to try to find whatever my body appeared to be fighting. Several swabs, more blood and 2 chest xrays later nothing had been found. There had been some question if we could go forward - however, the trial criteria only looks for a negative Covid test. Which we had. So everybody agreed we could get started, although now it was later than intended. 
They started with a liver biopsy, which was actually way easier than I had imagined. There wasn’t even an incision. It was just a needle poke, and with the meds I was on I didn’t feel a thing. They took me right from the biopsy up to the room I would be staying in. I was in the bone marrow transplant unit, so all the doctors and nurses would take extra precautions to make sure I was not exposed to any infections. The infusion drug was brought in and took about an hour. After that, I only had fluids and Tylenol. The rest of that afternoon I felt pretty good and all of my vitals were good. As part of the study, I have to have swabs of my nose and mouth, my IV site and the biopsy site and a urine test every few hours or so to see if my body is shedding the virus I was infused with. Easy peasy.
The room I was in was lined with big beautiful windows, which I loved because I love the natural light. The downside of this is it was a little bit drafty. So at about 4 o’clock in the morning, when I felt chilled, I just assumed it was because of the draftiness. I put on all of my layers of clothes, turned up the room heat, and tried to snuggle up under the blankets, but just could not get warm. At 8 o’clock when the nurse came back in to check my vitals everything still looked good. My doctor and the trial PA came in shortly after and saw that my teeth were chattering and said I was probably cooking up a fever. Sure enough, about five minutes later a nurse came in to check my vitals again and I had a fever of 103 and my blood pressure had dropped. I was no longer freezing cold, now I wanted all of the ice water! They gave me some more Tylenol and started infusing more fluids and more rapidly. This helped but not enough. The rest of the afternoon they continued rapid fluids hoping to get me back on track. At one point there was a discussion of some medications that might help get my blood pressure where it needed to be. However, the concern was that these medications are used to calm down the immune system. The the whole idea behind this is that hopefully we were alerting my immune system to the cancer. So we’re kind of between a rock and a hard place. Luckily shortly after that discussion my blood pressure started to come up a bit. By this time, it was about 6 PM and the decision was made to keep me an extra night for observation just to be safe. 
That night went much better, but my Wednesday morning bloodwork did show my hemoglobin was a little low. They decided to give me one unit of blood, and luckily that went smoothly. I’d told anybody who would listen that I wanted to try to get out on Wednesday on time to make the kids school conferences. My team was awesome and they made it happen! Conferences went well, and I went home and got ready for coming back the next day. This time I packed a heat pad and more warm clothes, just in case.
The next morning went much better. Bloodwork was good, we were able to stay on track for second infusion. They told me the grade 2 cytokine release syndrome I had has been more common for patients having their second infusion. I guess I like to stay ahead of the game! Everything went smoothly with the biopsy and the aftercare. I was basically just hanging out at the hospital. Goldie the gopher stopped by to visit, that was fun and unexpected. I got to go home Friday evening and had a quiet weekend at home. 
The trial follows me very closely, especially in this first cycle. So Monday the 10th I went in for bloodwork and more swabs. Later that day I got a call saying there was a couple of my numbers they were concerned about which could indicate I was experiencing tumor lysis syndrome. While a rapid dying off of cancer cells sounds good -apparently it can be dangerous. They couldn’t be sure if this was what’s really happening but decided to treat me with a medication for the next 14 days just to be safe. I did pretty good that week my only side effects being some fatigue and loss of appetite. Friday night in the middle of the night, my stomach was upset. But I think this was probably due to the new medication and not enough food in my stomach. 
Sunday night I spiked a fever and had a minor headache. I called the nurse line and was told I should go to the ER. Ugh. I realllly didn’t want to and poor Scott had to listen to me complain the whole way there. They gave me some fluids and ran a bunch of tests. The only thing they could find was that I was maybe starting to get a UTI. They decided to give me some antibiotics and sent me on my way. At 2 am. Gross. Monday when I finally woke up, I still had a fever and now my head really hurt. I was scheduled to see the research team at 1. They looked over my tests and ran some more. They weren’t so sure about the UTI but said I should probably take three days of the antibiotics just to be safe. Everything pointed to this being some kind of virus. Thankfully, I seemed to sweat out my fever Monday night and my headache was almost gone on Tuesday morning. So we are on track to start cycle 2 Monday, February 24. This cycle is just one infusion on day 1 with the liver biopsy and overnight stay. I’m so grateful for all the doctors and nurses that I’ve been seeing over these last 3 weeks. They have been amazing. Hopefully this round I will be a much easier patient!