The Discipline of Love

How am I doing since leaving the hospital almost a week ago? Well, I’ll tell you…I’ve felt better. My blood work is almost always “really good,” with the exception of my white count, which has swung up and down since the infusion of my modified T-cells. That’s not unexpected, but it does leave me with neutropenia and a compromised immune system — nothing new. It also means that when I visit the Ambulatory Treatment Center (ATC) at MDA, I get a shot of Filgrastim in my belly until my white count begins to recover.

Another symptom of neutropenia is fatigue. Again, nothing new there, but I get really tired of it — pun intended. I also feel light-headed and dizzy, especially when standing or kneeling. That’s as much from my naturally low blood pressure as anything else. In the hospital, my BP dropped to 87/55 — as low as it’s ever been, to my knowledge. The doctors told me that, like the fever, it was a result of the infusion: something to monitor, but not to worry about. So I didn’t.

The ATC is where I went daily following a visit to the phlebotomists in the lab on the second floor of the Main Building, just across from Elevator A. Every one of them was pleasant and friendly. I imagine that’s a quality MDA looks for in staff at a cancer-only hospital. Some of us arrive at the lab feeling less than cordial, but for me it was nearly impossible to leave that way — which speaks volumes for the men and women who work there.

Once at the ATC, I’d check in at the desk where Shantae always makes me feel welcome. She always greets me by name and has the kind of voice that draws you in like you've been her friend for years. She replaced the lab wristband with a new one that included a long number, the last three digits of which were the numbers the nurses’ aide would call when it was my turn. Antoinette, a pretty African American woman with freckles, wearing scrubs and a surgical cap, would take my vitals and show me to my room. Soon after, the nurse assigned to me would arrive to access my port and start an IV, usually of fluids.

When the results of my blood work came back, sometimes medicine was added to my IV, especially during those first ten days when I visited daily after the infusion. The only issue I had was raw skin from the bandages and tape used to secure the needle in my port.

I have to tell you about a new term I learned from my favorite nurse, who I will call Monique. When she first introduced herself, I wasn’t sure if she was an “all-business” type or if she had a lighter side, but John and I soon found out.

The conversation started with a reference to my port and my irreverent (but mostly unconscious) reaction when I learned post-surgery that I’d been intubated. Monique reassured me that one cannot be held accountable for what they say while half-conscious — or very elderly. Then she shared a story about her 92-year-old grandmother, who, she said, “has no filter.”

On her grandmother’s ninety-second birthday, during a big family celebration at their house, she looked out the window and asked who all those light-skinned children were playing in the yard. Only she didn’t say “light-skinned.” She said, “off brand.”

“You know,” Monique explained, “like the difference between Dr. Pepper at the grocery store and that other brand.”

She exclaimed to her grandmother, “Grandma! Those are your grandchildren!”

“No, they’re not,” her grandmother argued. “Where’d they come from?”

“From your sons and their white girlfriends,” she reminded her.

John and I laughed from the moment she said “off brand” and didn’t stop until she finished her story. Her grandmother’s phrasing wasn’t exactly polite, but it was memorable.

All the nurses I’ve encountered — in my doctor’s office, the ATC, the ACC, and during my hospital stay — are consummate professionals who excel in both skill and compassion. To experience their expertise is humbling. Making connections through lighthearted stories is simply icing on the cake.

I now visit the ATC only twice a week, on Tuesdays and Fridays following lab work. There are two separate areas: the Fast Track rooms on one side of the corridor, and the treatment rooms on the other. Once you’re scheduled to Fast Track, you meet with an APRN who reviews your test results and determines whether you need treatment, like IV fluids or a Filgrastim shot. In that case, you go back to the check-in counter, receive a new wristband from Shantae, and wait to be called. The visits can last anywhere from 20 minutes to a few hours, depending on what you need.

At my visit last Tuesday, APRN Michelly told us the FDA had approved a shorter monitoring period following CAR T. Instead of 30 days post-infusion, only two weeks are now required. Unfortunately, it doesn’t apply to me; my follow-up PET scan, 24-hour urine test, and bone marrow biopsy are already scheduled for October 14 and 17.

As all of this unfolds, I find myself reflecting not only on the medical side of things but also on what it means for my faith. When I learned about my relapse and began experiencing pain, I considered that God was humbling me. The first time around — chemo and the stem cell transplant — were a piece of cake in comparison, so much so that I even cheated to get out of the hospital in 17 days instead of the average 21. This time, however, I am committed to doing what is required and trusting God to take care of me.

Some people are surprised when I say that I feel God is humbling me. They insist He doesn’t bring calamity or disease on His faithful children. But scripture says:

“My son, do not make light of the Lord’s discipline, and do not lose heart when he rebukes you, because the Lord disciplines the one he loves, and he chastens everyone he accepts as his son.” 

— Hebrews 12:6

God wants me to let go and let Him. Too often I think I’m in control when I should be humbling myself and acknowledging His will for my life. Sometimes the lessons are hard, but I understand the sacrifices He asks of me and how they bring glory to Him. Nothing I suffer in this life comes close to the suffering of His Son for my sake. And I know He wouldn’t require it of me if He didn’t love me.

When I look back on this past week — the kind nurses, the hours in treatment rooms, the sting of needles, the dizziness, and the laughter over an unexpected phrase — I see God’s hand in all of it. He surrounds me with compassion through the people who care for me, gives me joy in the smallest of moments, and reminds me daily that His strength is made perfect in weakness. My body may be tired, but my spirit is renewed in knowing that I am deeply loved by Him.