Day 3 of the clincial trial fell on July 4, Independence Day in the U.S. It was the loneliest day for me to date. The immunotherapy fellows would be rotating out, and new doctors would rotate in. The attending physician would remain the same, however, and I was grateful for that. Nurses I had never met before would care for me over the holiday weekend; all of the familiar ones had the day off. I was feeling lonely and abandoned.
By this time I was familiar with the ebb and flow of the care-givers' routines. Vital signs, weight, and labs were drawn around 5 AM each day. I was given a pill cup with the morning's dose of anti-fungal, anti-yeast, anti-biotic, and anti-inflammatory drugs. A new I.V. bag was hung, and then I was left alone to rest. My sleep was challenged by the constant whirr of the I.V. pumps, and often interrupted by one or more of them sounding an alarm. The equipment seems to alarm most-often when it detects air in the line. Sometimes, the read-out on the machine would indicate "Hit Pause / Restart", which was easy enough to do myself, but more often the loud beeping could only be quieted by a nurse.
Boosted by the prior night's success with eating an apple, I tried another one at breakfast. All good. At lunchtime, I ordered two items, the one I thought I might be able to eat (mac-n-cheese) and a back-up item in case I couldn't handle the first item. I think the second item was toast. I don't remember. When the food arrived, I approached it cautiously. I was able to eat most of the 3 oz. scoop of mac-n-cheese, but it took an inordinate amount of time. Nausea still crowded at the fringes of my appetite, however, I began to anticipate the possibility of being able to eat a baked potato. Not yet! Not yet.
The day dragged along. I slept a lot, and read, and prayed. I skyped with my daughters, who were on a road trip together for the long weekend. I remembered fun times from earlier 4th of July celebrations--time spent preparing loads of picnic fare: homemade chocolate chip cookies, potato salad, and tons and tons of fresh melon, berries, and nectarines. Patrick would always grill something delicious. I missed the food. I missed my family. I was homesick.
At some point, a nurse gave me the wise advice to regard the taking of a daily shower as the most important goal for the day. Neutropenic patients are at risk of infection, and personal hygiene is strongly encouraged--not to include shaving, tweezing, or flossing, however. Those things pose too big a risk. I confess that I was unable to suppress the urge to floss daily (got caught recently--not doing it anymore...sigh). An evening mouth-rinse with sickeningly sweet, gag-worthy fluoridated liquid is expected of the nursing staff. Every single night I had to talk myself into using this gunk. It was never easy.
Showers at this point were best coordinated with the completion of whatever drug was being infused. The nurse could disconnect the I.V. pump, giving me a great sense of freedom for the duration of the shower. My I.V. meds are infused through a Hickman catheter, which in my case includes two "lines", terminating in plastic caps (one red, one blue) that sort of dangle directly from an opening in my chest. The catheter exit site (wound site) is covered with a 3" x 3" mepilex bandage. Normally, they use a transparent dressing, but I am sensitive to adhesive. My skin would blister and itch with the standard dressing. In terms of nursing care, the reality is that instead of cleaning the site and changing the dressing once per week, it must be done daily. The reason is that the low-tack dressings are opaque, thus preventing the staff from being able to note signs of infection at the site.
From underneath the bandage, a single catheter extends outside my body to a plastic junction thingy in which two separate catheters are joined to the initial one. The junction piece connects the three catheters together, forming an upside-down "Y" shape. The catheter is effectively "split" in two, introducing what are called "lumen"--the two branches of the "Y". Each lumen includes it's own clamp and capping hardware. It looks like I have two ball-point pens hanging from a bandage on my chest. One lumen is capped blue; the other red. The junction piece has been secured to the main catheter by the surgeon with (I guess) nylon thread. It is stiff material, like fishing line, which I need to be protected from, in case it were to puncture the skin. To accomplish this, the junction piece is clipped into a little gizmo that provides stability and a mounting surface. This gizmo, then, is anchored to an adhesive patch of some sort, which would normally then be stuck directly on the patient's skin. Since my skin can't tolerate the adhesive on the patch, the surgeon used a piece of duo-derm between my skin and the patch. This whole assemblage of stuff: junction, clip, patch, and duo-derm swatch, sits just below the dressing I described above. These items are permanent fixtures while I'm here, and do not require additional care until the duo-derm layer gets mushy (it has happened only once so far). (Duo-derm is some magical substance that adhesive-sensitive people can tolerate having on their skin for long periods. So far, so good in my case. It is thin, spongy, and flexible.)
Every day since the surgery to place the Hickman catheter, the best part of each day (not counting skyping with the family) has been the changing of the dressing. Each time the nurse peels away the mepilex dressing, my skin rejoices. Next comes a vigorous scrubbing with a wand-thingy (CloraPrep) to remove any dead skin cells, and clean the area. After two minutes of drying time, a fresh dressing is applied. The nurse writes the current date on the dressing, and my skin goes back to being annoyed. Note: "annoyed" is far better than "angry".
I planned to campaign heavily to have the Hickman removed before I am released. Even if it were to delay my departure by days, I would agree to it. That's how much I hate this thing.