I ended up spending six nights in the hospital. I was released Tuesday around 5pm after a very long day. Tuesday morning started off on a good note, because I knew I had had made it the required 48 hours of being fever free; however, with each hour I had to wait to be discharged, I feared each vitals check which came every couple of hours, scared the fever would return. I knew my counts from my Monday midnight blood draw were not great. I was still sitting at a 0.6 ANC (absolute neutrophil count), which is just above the 0.5 neutropenia level, which would require me to stay in the hospital. My inpatient oncology team came in around 8:30 and announced that I would be discharged despite my ANC level sneaking in right above the critical level. They said that they still concluded that my fevers were due to my low neutrophil level because all of my cultures were still clean. They wanted to wait to discharge me until we had a plan in place, which required having Elizabeth (my clinical trial nurse) deliver the clinical trial cohort’s opinion on my PET scan. Daniel, Jason, and I spent the morning frustrated with the hospital/doctor/medical staff slow pace of getting anything done and researching anything we could find on the long term success of DLBCL patients that receive chemotherapy in three vs. six rounds vs. those that receive chemotherapy plus radiation therapy, to help prepare us to make a decision if the clinical trial determined my PET scan was not clear.
By 3:30, Elizabeth finally made it up to my room. She said that according to the UNC clinical trial team, radiologists, and Dr. Park all concluded that my PET Scan was clear!!! This was amazing news: that I had fully responded to chemotherapy in only three rounds, but she didn’t have the opinion from the cohort yet, so as Dan and Jason felt relief, I couldn’t fully revel in this, because without the cohort’s opinion, my treatment plan was still uncertain. We finally left the hospital around 5:00pm, and I felt confident knowing that chemo had been effective, but in my typical form, wanted that final “t” crossed, so I could finally breathe. Elizabeth left it that she would email me with updates, which dragged out over the course of Wednesday and Thursday. She also scheduled me for a blood count check on Friday morning and tentative chemotherapy infusion, assuming my counts had risen and the cohort delivered their opinion. Finally on Thursday afternoon, Elizabeth emailed saying that the cohort had confirmed receipt of the scans and all necessary files and that they would deliver their opinion later last night, to which my thoughts were: “are you fucking kidding me?! The scans were completed a week ago!”. I did my best to let it go and distract myself with work then a cardio strength class. By 9pm last night, I had no email from Elizabeth, so I let the exhaustion from spending six nights in the hospital win, and fell asleep on the couch with the girls waking up only to move us up to bed.
Jason and I got up this morning, and I still had no email with results, so we headed over to Chapel Hill with no idea what the day would have in store. It could either be a day of celebration where the cohort’s opinion was the same as UNC’s and we would have to prepare for only one more round of chemotherapy, or we would be faced with deciding between continuing in the trial and preparing for involved-field radiotherapy (IFRT) or deciding to withdraw from the trial, which would mean 3 more rounds of chemotherapy. When we arrived at the hospital, it was extremely busy, which was not conducive to my stress level. I found everything and everyone around me absolutely horrible and terribly annoying as I waited for my port to be accessed and blood drawn, then waiting to meet with Megan (Dr. Park’s PA). Fortunately, the wait times were minimal despite the crowd. I had my vitals checked and we were moved to room, which faced the same direction as my inpatient room and had a view of a crane, which I found amusing, because I spent the past week watching the crane and the workers doing construction. Outside of watching the crane, I sat there trying to find any last piece of information on the benefits of IFRT and additional rounds of chemotherapy so I could be prepared to make a decision when Megan came in to deliver results. I found nothing more conclusive, and expressed my frustration to Jason that science had not advanced enough in the study of Non-Hodgkin’s Lymphoma to make my decision easy so that I would know not only could we beat this, but also what treatment plan would allow me to have the best chance of not relapsing and having the longest life span despite battling cancer.
Finally Megan came into my exam room and without an exam or any nonsense, said that the trial agreed with my UNC Lineberger oncology team that my PET was clear! She said that the only bad news she had was that my ANC had not risen and was still at 0.6, so we’d have to think happy neutrophil thoughts over the weekend, so I could be ready for my last round of chemotherapy on Tuesday! Instinctually, both of my arms immediately shot up into the air and I let out an excited “Yayyyy!”. This means that I only have to go through one more round of chemotherapy at this point, making it a total of four rounds, after which I will be monitored to ensure I don’t relapse. I immediately felt a smile appear on my face, and I don’t think it’s left it since. I hugged Jason, and we left the hospital with a revived pep in our steps, truly happy walking out of there for the first time. This news made six nights of hospitalization and every instance of fatigue, mouth sores, nausea, dry skin, hair loss, headache, and every other pain I’ve felt through chemotherapy seem worthwhile. The amazing news was made even better as I spent the afternoon starting to share it with everyone who has loved me and helped me through this. No one fights cancer alone, and I’ve been fighting with the most inspirational and incredible people, and for that, I will be eternally grateful.