Bryce
I thought I posted a mid-cycle update for 2B but it looks like I’ve neglected the blog so here’s a full recap. Heads up, I’m in a bad mood so this post may be more negative than it otherwise would be if I was pleasant.
Hospital Stay
My hospital stay was five uneventful days, which is good. On the first day of B cycles you’re pumped full of methotrexate (MTX) for 24 hours and then released once the MTX in your blood drops below a certain level; typically it takes 3-4 days and they deliver additional chemos on days 2-4. The doctor was going to release me a day early but the levels in my blood were just above the threshold. Prior to my diagnosis my short term goals included optimizing spend on a credit cards to earn rewards, riding the Peloton for X amount of time, or replacing light fixtures, etc. My new goal is to drink as much water as I can during 3B, pee out all the methotrexate, and get released on day 4 instead of day 5. #goals
Home Stay
2B has been the most challenging cycle thus far. Physically I felt fine with occasional nausea but emotionally it’s been tough. I returned from the hospital with an oral chemo pill, Rydapt, which I take days 8-21 and a prescription for Bactrim to eliminate the remaining pecan size mass in near my groin from the previous cycle’s infection. Like any chemo, Rydapt can suppress white blood cells and as a result, I had 0, count them, 0 neutrophils for about two weeks. I couldn’t eat any fresh fruit/vegetables or go outside for two weeks; it was awful. We also had to reschedule our romantic weekend at an Airbnb on the lake because I couldn’t leave the house.
Sunshine and NA Beer
The day I found out I had enough neutrophils to go outside, one of Mary Beth’s family friends dropped off an unexpected care package that included non-alcoholic Heineken beers. The timing was impeccable. I enjoyed a couple of NA beers in our backyard that afternoon with MB. The weather was perfect, the company was perfect, and the ice cold NA beers were perfect. It was glorious. Most days I make a mental list of things I’m grateful for and that afternoon made the list the subsequent three days.
Platelets Playing Hard to Get
Neutrophils fight off bacteria and viruses and as I’m learning, it’s pretty easy to get sick when neutropenic. This cycle I acquired a toe infection. It seems so minor and silly, but I immediately called my oncologist’s nurse to share my symptoms – pain, redness, and a slight fever (99’s). My Bactrim dosage ultimately increased from one every other day to three pills per day. Based on my internet research Bactrim beats up platelets. Rydapt probably kills platelets as well. I spent most of my recovery period platelet deficient and had to get two transfusions; prior to this cycle, I’ve only received platelets once. Turns out you need platelets, and when you don’t have them weird things can happen like unexpected nosebleeds. I had a few nosebleeds one which lasted 20 minutes and almost sent me to the ER. It’s kind of funny to think about now but it wasn’t enjoyable in the moment.
You also need platelets to be admitted for treatment. I had 27K the day before I was scheduled to start 3B and the cutoff was 50K. Dr. V delayed admission six days to let my body recover. As I’ve mentioned in previous posts, I don’t handle delays well. 1) You prevent leukemia from returning by hitting it with a lot of chemo over a prolonged period of time. Luck also helps. Each delay stokes my fear of relapse. I had to resume the anxiety meds I was prescribed when I freaked out during 1A to help cope. I’m not sure how I’m going to handle the fear of relapse once I make it to maintenance, but we’ll cross that bridge when I get there. 2) I’m tired. I’ve been doing this dance for 3-4 months and each delay prolongs the process. I’m ready to have some sense normalcy in my life and return to work.
Cycle 3A
I was admitted this afternoon and hooked up for my first chemo as I’m writing this. They assigned me to room E711 which is the same room I was in for my initial 22 day induction. I’ve never felt loneliness, fear, and despair like I have in this room. Some of the worst days of my life were in this room. I hate this room.
The floor has a new policy that requires a nurse or tech to check on you every hour. They have to sign off on a sheet on the wall – similar to the sheets you find on the back of a bathroom door in a gas station. It seems obnoxious. I can’t wait to see how this new policy affects my sleep.
Stop Complaining Already
No one likes a complainer so I’m going to end on a good note. This has been the toughest few months of my life, but I’m half way through it with minimal physical side effects, thankfully none that are lasting or life altering. After this cycle I have three left which equates to 17 days in the hospital and only one more encounter with the red devil. Hallelujah!
Finding a meaningful way to spend all my free time when I’m home recovering has been one of my greatest struggles during this experience. Real estate has always been a passion of mine, and this week I signed up for classes to become a realtor. I hope the courses will help dust off some of the chemo brain cobwebs and keep me occupied. I have no intention of quitting my day job but we‘ll save a little money ever sell the rentals (sorry Whitney).
Lastly, after 40 days in the hospital I finally asked for non-slip socks. I don’t need them but I want them. They’re pretty sweet.
Metrics that Matter
- Physical feels: 8/10
- Emotional feels: 6/10
- Hours of chemo: 1A-67.33, 1B-39, 2A-66.33, 2B-38, 3A-2
- Butt: it‘s okay right now but it’s time to call a spade a spade. I have butt issues. I haven’t “ripped my butt hard which lead to months of extreme pain while pooping” like the reddit user forewarned but hard stools are unpleasant experiences.
