DAY 9: Leaky joints... flat-out...

In the words of the great teeny-bopping poetic genius of our time, “Oops, I did it again.” (-B.S.) I have managed to let another few days pass since I proffered a check-in. My apologies. The consistent pattern seems to be that I wake up generally feeling ok, with good intention of cataloguing at some point that day… but then things inevitably change. A wild ride commences, over which I seemingly have little (or no) influence.

Let me bring us current, as best I can. Monday morning started with a requisite visit to the Emory Clinic. The Clinic is an outpatient center, across from the main hospital where I stayed, where people come for check-ins, lab work, and various infusion services (blood and platelet transfusions, outpatient chemos, fluids, etc). At 8:30am, this place was a sheer cattle call. People everywhere, most of them sickly and puny-looking (I include myself in this grouping). Median age: probably 60.

There was a general buzz about the room. The intake process consists of filling out some paperwork, and then taking a seat (or a lean against the wall) in the waiting room area for an unspecified amount of time until your name was called (yelled) by a very portly (don’t mistake with jolly) man named Grady. He was like the Disgruntled Emory Clinic MC, of sorts. Grady had a bald head and a heavy beard and would seem to get very frustrated every time he would yell a name and get no immediate response. “Powell…?” “POWELL????” Then some frail old lady, barely in earshot, would realize her number was up and would attempt to stave off the next accusatory lancing. By individual facial reactions, I would wager that this was the first time many people realized that their very own namesake could be used as an invective. I was sure to listen for “Smartt”. And when they called it about an hour later, I was ready.

They took me back and accessed my port for the first time since I was discharged. This consisted of pulling off the steri-strips (the incision is tender and still healing), poking on it to confirm the type and location of the access points, and then sticking a plastic casing with a curved needle into it in one smooth motion. Prick. Once in, they tape it up to keep me from ripping it out with an incidental arm movement, and then hook up a tube to plug in whatever the soup of the day need be. They took two vials of blood, and promptly sent me back out into the waiting room. The Land of Grady. Another hour-long wait, and the lab work was complete and they brought us back into the infusion area.

What I neglected to mention thus far is how miserable I was feeling that morning. I have learned that so long as I am on my back or lying down, I feel more or less stabilized. Conversely, when I am sitting, standing, walking, or in a car, I feel like the place is on wheels. My vision starts to play tricks on me. Not a fun feeling. As a result, I was a ‘fall risk’ in the clinic, meaning I got a special red sticker on my arm band that indicated such a distinguished privilege.

We spent the rest of the day – and I mean the rest of the day – sitting in a chair in the infusion center, among other elderly and cancer patients. Most of the day was spent waiting on someone to hear back from my doctor on what to do next. I was given a bag of IV fluids, a shot called Neulasta to stimulate my white blood cell growth, and a cup of Coke. (Note that I have been told by more than a handful of RNs and MDs that good ol’ Coke is the best thing for a variety of symptoms. I am still skeptical but will acquiesce for now.)

The ride home from the Clinic at the end of the day was pretty tough. It’s certainly not a straight shot from our home to Emory: lots of curves and turns. It’s also humbling not to be able to drive myself anywhere. Candace has continued to be the most unbelievable helper and caregiver one could imagine. She is truly a gift to me. I am so grateful.

Monday night our pastor Kris came over and gave me a ceremonial haircut. (He's not gifted in this area, but had access to some clippers) They told me that hair-loss is a lot more manageable when the hair falling out is already short, as it comes out it clumps. So Kris gave me a nice buzz. Feels great. He’s a big-picture guy, so we still need to go back in and trim around the edges, if you know what I mean.
Tuesday, Day 9, was a truly wild one. I woke, again, feeling decent, but all that changed when my migraines and nausea returned. It just creeps up on me out of nowhere. Different, this time, was that lying down on my back didn’t seem to abate things. I got to the point where I took a pain pill (my first on thus far – as I try to avoid them) they had prescribed me. It knocked me out considerably, but didn’t really help stop the madness. I was on my back, in the middle of the afternoon, and all of the sudden got a pretty violent vomiting attack. Came out of nowhere, with no warning. In one three-mintue fit, there went all my food and liquids. I was instantly dehydrated and knew that IVs would be needed to return me to stabilized levels. We called Emory and they told us to head to the ER. While I wanted to get back to Emory’s ER, which would make a possible re-admission more streamlined, I was unable to stay in the car any longer than I absolutely had to. Thus, we limped a few miles away to Piedmont (where this journey started with my Appendectomy!).

To make a long story short, prevailing medical thinkers suspect that the many failed lumbar punctures from last Tuesday are the culprit for most of my migraines. Gravity takes over and the spinal fluid leaks when standing or sitting, as opposed to lying down. Other than ‘riding it out’, a procedure called a blood patch was suggested, whereby they try to essentially plug the leaky spinal hole with my own blood… but since I have multiple holes and a delayed response, we’re somewhat forced into a wait-and-see pattern. We were at the Piedmont ER from 5pm until 2am. It was a long, slow night. We ended up getting another round of lab work, a cranial CT scan, and 3 more large bags of IV fluids. We went home and crashed.

Today is a new day and I’m glad we’re moving forward!