On Day four of the trial, at 2 AM, I spiked a fever. Neutropenia and fevers are not a good combination.
I had visited with the out-going immunotherapy fellow (fellow) sort of casually just a few hours prior, a sort of "see you later"--our version of a farewell--but had not yet officially met "the new guy". At 2 AM on Sunday morning, I did. What a way to break in a new fellow...
My room was dark, and I was uncomfortable. My head was throbbing. I tried to ignore it, thinking that a headache under the conditions I endured was probably no big deal, and maybe even to be expected. I was so, so tired, and it seemed easier to just lay there, hoping for sleep rather than to bother about asking for meds. The night nurse came in to do...something. I recall muffled voices, but couldn't make out what was being said. I was in a haze, and wanted only to sleep.
The next thing I remember is light streaming in from the doorway. A tall somebody in a white lab coat crouched by the side of the bed, resting both arms on the bed rail. He introduced himself and explained what a fever could mean in a case like mine. I wasn't aware that I had a fever, but my head was killing me. "Only a small percentage of patients on the protocol develop an infection," he said, "but any sign of one means that we'll treat you as though you do." An I.V. antibiotic was started immediately. I remember feeling sorry that "the new guy" had to start off his rotation on the service with such an early call.
Extra labs were taken then for the next many days. Initially, they drew cultures from two different spots: one directly from a vein, and the other from the Hickman catheter. These two samples would be analyzed day after day to determine what, if anything, would "grow out". They used samples from two different locations each time in order to set up two different cultures. This allows the researchers to be able to rule out the possibility of contamination confounding the results.
They gave me Tylenol for my headache, and that helped tremendously. I slept fitfully. In the daytime morning that same Sunday, I was given a transfusion of hemoglobin (red cells only--we didn't want to interfere with the TILs in any way).
During morning rounds, the attending physician went over the same information that the fellow had the night before (actually, it was only about five hours before). I was receiving I.V. hydration at this point, and for the next five or six days thereafter. Each morning, I had to take a lot of pills. On one of the nurse's advice, I developed the habit of eating an apple or an orange just prior to the early-morning nurses' visit so that my stomach would better-handle the anti-inflammatory, indocin. Peeling an orange released a burst of freshness that seemed to jolt my senses to life each morning.
During afternoon rounds, I was informed that--so far--nothing had grown from the cultures. The attending physician said that at least we now knew that if it was an infection, it was not a scary, fast-growing one. [Later I learned that one culture--only--grew Staphylococcus saccharolyticus, but it was thought to be a contaminant, since it only grew from one culture, and it is not known to cause fevers.]
Day 5 was Monday. I received daily visits from a minister who I affectionately nicknamed, "The Wandering Priest". He offered me the Eucharist daily, but I wasn't always able to participate. Nausea was bad, despite I.V. meds to control it. I shudder to think what it would've been like w/o the meds. More often than not, he'd point to the triangular, orange, medical trapeze suspended from the ceiling above my bed by a chain and remind me to, "Hang in there." I admit I grew tired of this phrase!
I was tired. So tired. The fellow visited four times each day, twice alone, and twice on rounds with one or more other doctors. Sleep was not happening. If by some miracle I was able to rest, it was not long before it was time for vitals, medications, bandage change (for the Hickman), or some other necessary disturbance. Every day, news about my labs would be the same: neutropenic. My bone-marrow was still on its chemo-induced vacation.
Showers had been a bright spot in the day, but now my hair started falling out a bit more noticeably. ...not in clumps, but in groups of say, ten strands at a time. The shower drain would collect more and more hair. I always scooped it up and threw it away. I didn't want to see it, or to gross out anyone who might peek into the shower.
I met a fabulous nurse about this time (truly, they all are very skilled and compassionate). We had many good conversations, many about parenting. She has a wonderful sense of humor, and I was always happy to see her. She would be my day nurse for the next three days.
When she found out that I was using dental floss while neutropenic (she spied it in my bathroom), she hit the roof. "You cannot do that! You have to stop." My fellow happened to be in the room as the nurse was scolding me. He looked at her, then at me.
Doc: You're still doing that?
Me: Only, like, every day. Once. Just one time, each day.
Doc: No. No, no, no.
They did not physically remove the floss from my bathroom, but they made it clear that under no circumstance was I to be using floss until my neutrophils returned. Giving up flossing was harder than I expected. "You know, periodontal disease is a serious thing..." was my lame defense.
They weren't buying it.
Next came a graphic description (thanks to the fellow) of germs acting like cock roaches in the blood stream and something about flossing exposing the cock roaches. I don't remember. I only remember: GAHHH! My imagination is too good, sometimes, and the idea of cock roaches made my stomach churn. "Enough! I'll stop flossing!" And I did. Ugh.
Next up: Sleen loses her hair.