Storyline: Thinking in Autumn Colours
From the horse’s mouth
Sat Sept 11
The weekend ENT (ear, nose, throat) doctor came by on his rounds and gave me an update. Here’s what I texted Diana after his visit:
The medical team is stumped that they haven’t yet been able to find a root cause. They are hoping that this special CT scan and a X-ray [live fluoroscope] of me swallowing will shed some light and they are much more immediately concerned about the swallowing issue than the original problem because that is more dangerous (my words). If I can’t eat or drink, I can’t survive.
It’s a norm that they can safely have a patient get no nutrition for up to 7 days. After that they have to get some in. So, I may get a feeding-tube if they can’t get me swallowing properly
And their focus on the oesophagus may lead to MRI and other tests. By now [they think] it could be neurological so there’s another specialist. He’s thinking that this could go on for weeks, maybe months
…I knew about needing nutrition. And the possibility of a nasal tube. He also said that if it’s going to be longer term then there may be one put in my abdomen
Sun Sept 12
In addition to the headaches, for which I was now regularly taking one or two doses of hydromorphone overnight, but managing without during the day, or was asking for Tylenol to take the edge off, the left side of my throat was also getting extremely sore. The arrhythmia continued and I asked for and ECG as my annual appointment wit the cardiologist was the following day. Of course, by the time they brought in the machine I was back to normal rhythm.
Mon Sept 13
A busy day for me. I was wheeled down to radiology to have a swallow test by fluoroscope…a live x-ray of my attempts to swallow. I was again given water, apple juice and apple sauce, this time it looked like they contained something like barium to provide contrast for the x-ray. While it was fascinating to watch, the results were disappointing. Not only was my left vocal cord not closing when I swallowed, but the epiglottis was also paralyzed, confirming that it was dangerous for me to eat or drink. The cause of this problem, though, was a mystery as there was no physical damage.
I was wheeled back into the corridor to await a porter. Across from me was another gurney with a man a little younger than me and a caregiver seeing to him. When she heard my name mentioned she came over to me and told me that she’d heard my name a lot as I was in the room next to her husband, who had the same symptoms as I. Doctors were stumped about his condition, too. She asked if she could come and see me when we were back in our rooms. “Why not?”, I thought. Unfortunately, it didn’t happen and I never discovered his final diagnosis.
Back in my room, I noticed I was no longer in isolation. That meant that I was likely to be moved to another room, and since Diana and I have no supplemental health insurance, I was likely to be put in a four-person room. Given my condition, constant clearing of my throat and spitting out saliva, I didn’t think I’d be very welcome.
Due to Covid protocols my cardiologist’s appointment was to be by phone, and I duly croaked out my story to him, barely making myself understood. I was glad that he had eyes on my situation. He was associated with the same hospital and had easy access to the electronic medical records.
The dietician came by and told me that she was working on an appropriate liquid diet for me, I
was taken down for a high-contrast CT scan, had an NG (nasogastric) tube inserted through my nose and down to my stomach, followed a couple of hours later by an in-bed x-ray to verify that it was inserted to the right position, and finally moved to a semi-private room. Phew! Of course, I slept between each of these “interruptions”.
Tue Sep 14
The results of the x-ray were that the Ng-tube had to be pulled out about 10 cm. Once the nurses had done that and taped it to my nose, I would finally be fed. Then the neurologist arrived while Diana was visiting. Diana had prepared a timeline of my descent, which the neurologist read with apparent interest. Diana observed that, from the questions he asked, he seemed to think that CLL was at the root of my problems. He said that he would order an MRI and was gone. Then the dietician came and explained that they would start feeding me for 14 hours a day at 25 ml per hour.
Wed Sep 15
I definitely wasn’t getting any better. I could still get myself through the day, but the headache on the left side never abated, and the shooting pains continued to arrow through my temple and ear beginning every evening. Hydromorphone was my evening friend. And I was still spitting out phlegm by the bucketful.
I expected that Diana would not be visiting this day. She was taking the van to a friend’s, about an hour away to get help dumping the waste tanks. We were both destined to have somewhat unpleasant experiences on our day’s journeys.
This was MRI day. A neighbour had told me of his experience with said machine, and it wasn’t positive. Fortunately, I thought, I don’t suffer claustrophobia as he does. After I was deposited in the waiting room I was directed to a chair and waited, filling facial tissues with my spit and mucous. I hoped that I would be able to stop the flood while in the machine.
About 20 minutes later, they were ready for me. As the technicians let me into the room, I told her that I was generating a lot of saliva that I could not swallow. They seemed unconcerned, but I was definitely a bit worried when one indicated that the process would take 40 minutes. I was laid onto a movable bed, head immobilized with foam pillows, then a transparent canopy placed over my face, just a few centimetres from my nose. I was very, very glad that I am not particularly claustrophobic. And my saliva had fortunately dried up. The technicians admonished me to lay very still and left the room. Then it started. The table slid into the MRI and the noises began. Clicks, groans, pops; all in short bursts. I had the image of a smoky Berlin nightclub in a cellar where the patrons gyrated to the sounds of avant-garde electronic music that stuttered and started in a not very musical way. The dancers moved to their own internal music during the frequent pauses in the cacophony.
And I started salivating again. My mouth slowly filled, and I couldn’t swallow or spit. Just ten more minutes, I thought. Hold it. Hold it. I couldn’t hold it. At a pause in the proceedings, I yelled, “I NEED TO SPIT”. “OK, we’ll pull you out, but don’t move your head. Stay very still”. I was desperate. The bed slid out; the canopy removed. “Don’t move your head!” A few tissues were stuffed into my hand and I filled them quickly. Then it was back into the machine for the final rounds. I managed to hold my spit and gratefully sat up when it was over. It wasn’t claustrophobia, but the feeling of being trapped and unable to swallow had been almost overwhelming.
Back in my room the feeding rate was increased to 35 ml/hour, and I slept.
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