Bryce
The issues that popped up during cycle 1B’s recovery period have resolved themselves for the most part. One liver enzyme is slightly elevated and the others have returned to normal. My butt is in decent shape as the hard stools were mitigated with a daily dose of Colace. The pain caused the blood clot resolved after a few days of blood thinners; the clot still exists but will clear out as I continue using the blood thinners.
Hospital Stay
I spent seven days at UAMS and received 66.25 hours of chemo. The first four days flew by, and I felt good – energy was up, no nausea, and kept busy with video games, media, and phone calls. The 48 hour red devil, doxorubicin, drip starts in the evening of day 4 and runs through day 6. Day 5 was okay but days 6/7 were terrible; likely due to a combination of red devil and steroid withdrawal (steroids are given days 1-4). I basically laid in the hospital bed all day on day 6, whimpered and felt sorry for myself. Day 7 felt like one of the worst days of my life; I’d liken it to the worst hangover you’ve ever experienced – you’re nauseas but not puking, you’re tired/fatigued but you can’t sleep, and you’re miserable and can’t find relief. I was released from the hospital on day 7 and instead of laying in bed all day I whimpered in the 3 hour car ride back from UAMS; wonderful road trip company I was not.
Before we left Little Rock we stopped by the UAMS Cancer Center to get a Neulasta shot. The shot encourages my bone marrow to create neutrophils which reduces the amount of time I’m neutropenic and lessens the chance live plants kill me. Sign me up. The shot must be administered at least 24 hours after your last chemo and they attached a device to my stomach that would detonate 27 hours after it was armed. I was forced to watch a 20 minute video on how to take care of this device and what to do in the event something goes wrong. Mind you, I was dealing with my day 7 hangover and my attention span was nonexistent. The only thing I remember about that video is trying to click the “next” button as soon as it was available so I could get out of there ASAP. I also recall the nurse saying, “eww your belly hairy” when I lifted up my shirt for her to attach the device.
Sleep was difficult to come by the night of day 7 because I typically sleep on my stomach which would have crushed the device. When was I able to sleep on my back it was an anxious sleep because again, I was afraid I’d crush or rip off the device. I nursed this thing for 26.75 hours and with 15 minutes left I caught the device on the kitchen table as I was standing up and ripped off the top part of the adhesion tape/seal. Panic ensued. I’m standing there holding the device to my stomach to prevent further removal and wondering how this situation was addressed in the instructional video; meanwhile Mary Beth was fast on her feet and retrieved packing tape. Packing tape anchored to my belly hair resecured the device to stomach, and I proceeded to lay like a statue in the recliner until detonation. The device went off over 45 minutes and the injection seemed to be delivered according to plan. Crisis adverted.
Recovering at Home
So far the home recovery has been great. I’ve felt really good but have limited stamina though it seems to be improving daily. Yesterday was my last chemo of the cycle and it was outpatient up here in NWA which was nice. I’ve also taken steroids the past two days and will continue for another two days. At this point in my first cycle I was questioning if they were giving me enough chemo and was confident I could start a new side hustle and as well as travel the county in a RV while on my recovery breaks from the hospital. I was so naive. I anticipate being humbled again as the steroid withdrawals hit and my counts bottom out in the coming days. But so far so good. I did start looking at RVs again lol.
Mayo Clinic Second Opinion
The Mayo Clinic is Walmart’s center of excellence for transplants. Kicking off the transplant evaluation starts with a second opinion which I initiated in between Cycle 1A and 1B. Mary Beth and I had call with a Mayo leukemia doctor to discuss the second opinion on Thursday. I was nervous and anticipated them recommending a stem cell transplant. After a pretty thorough discussion of my current treatment plan and review of test results, the doctor’s opinion was, “a transplant is not strongly needed”. We interpreted that to mean based off the information we have today, continuing with my chemo only treatment plan is acceptable but with young adult leukemia there’s not a definitely right answer.
The doctor did express it was critical for me to have an MRD Flow test which could modify his opinion. I’m in complete remission based off the bone marrow biopsy and review under a microscope and possibly some other device (not really sure here). MRD stands for measurable residual disease and as I understand goes down to cellular or molecular level. Basically a more detailed analysis than what I‘ve received up to this point. If residual disease cells are detected then it likely becomes advisable to pursue transplant. The bone marrow biopsy and MRD Flow test are scheduled on Sept 10th, and we’re obviously hoping for a negative MRD status.
Metrics that Matter
- Physical feels: 9/10 – Steroids, man
- Emotional feels: 8/10
- Cumulative hours of chemo: C1A-67.33, C1B-39, C2A-66.33
- Butt: still intact
