I am living a double life here in Houston. One is fairly normal, not all that different from the “old me.” The other life is the tumultuous existence of a cancer patient. I don’t live either life independently from the other. No matter how “normal” I feel on a given day, there is always an ominous undercurrent that reminds me I am living with a deadly disease.
I’ve been blessed to feel well much of the time. Most days I don’t even feel like I’m sick. The exception is the awful nausea that comes from the chemo pills. I plan my day around the nausea, or, more precisely, plan the nausea around my day. It requires good military backward planning to ensure I take the medicine early enough so that it passes before I have to leave for my first doctor’s appointment. Three hours early is the norm: one hour for the anti-nausea (ha!) medication to take effect; one hour after I take the chemo for the nausea to hit; and one hour to lay on the couch before we have to leave.
I was promoted to Lieutenant Colonel this week. This was a long-awaited blessing that brings a timely pay raise. I’ve also been working out more. I’m even doing pull ups again. I can’t do as many as I could before, but I’m making progress. I felt like a new man yesterday after I got a decent military hair cut. My hair has finally grown back enough. Of course, when I took off my shirt to take a shower, my bony arms and the catheter protruding from my chest served as stark reminders of the other life.
The “normal us” took Emmy and Abrie to the zoo this week. We also took Emmy to the Museum of Natural Science. She enjoyed both. I held up well, although I got tired toward the end of both days. These two normal family events bracketed the lumbar puncture I had on Tuesday and the appointment with my transplant doctor on Wednesday. We went out to eat Mediterranean food last night. It’s one of my favorites. My neutrophils are normal, so my food choices are less restricted. I scarfed down hummus, falafel, and kabobs, knowing that I could soon become sick. Sure enough, I only made it through two thirds of my plate. Disappointing…although I did ignore the nausea for some baklava.
Emmy and Abrie are happy, healthy, and growing. Most days I get to be a Dad, playing with them, teaching Emmy, and occasionally changing Abrie’s diaper. Often when I look at them, though, I am vividly reminded of how uncertain our future is together. My most frequent and fervent prayer is that I’ll be around to raise them.
I have only two more days of the experimental chemotherapy this cycle. I’ll have another bone marrow biopsy next week, after which my doctor will decide the next step. The expectation is that I’ll need another cycle. Unfortunately, the results of last week’s lumbar puncture (LP) were positive for leukemia in my central nervous system. This means regular LPs again (two next week) that will deliver chemotherapy into my spine. It also could disqualify me from the clinical trial; we’ll find out next week.
I was discouraged yesterday when we got the results of the LP. I tried to pray but I mostly sat there trying to process this news. After the appointment, Christi quickly ran into the library while I waited. “Whatever you want, God,” I prayed with a cynical tone. It was the equivalent of throwing up my hands in exasperation. A minute later I was shamed when I saw a mother pushing her 3-4 year old little boy in a wheelchair. He was bald from the chemo. “Shut up, Jeff.” My family is well and I’m not dead yet, so what is there to complain about?
Most of the time I feel and act like a normal person, but the weight of the “other” life is significant. I try to take my thoughts captive, but doing so doesn’t erase reality. But faith isn’t about ignoring reality; it’s about believing that God can change it. Despite this discouraging week, we still believe He can. And that He will.
“Now, faith is the substance of things hoped for, the evidence of things not seen.” Hebrews 11:1
Sir, you are a true inspiration to so many. Keep the faith that God can move mountains…we are all praying for you daily! We are here for you & your family…sending love & well wishes your way…The Roarks
Thanks for being so faithful to pray for us.
Congrats on your Promotion SIr. Prayers for you and your family from ours EVERY DAY!
The Jacksons
Thanks, sergeant major!