Storyline: Thinking in Autumn Colours
From the horse’s mouth
Thu Sep 23
My hematologist called. He was actually on vacation but had been contacted with the results and had immediately done some research and called me. The results of the spinal tap were conclusive, and they indicated that the leukemia cells that should stay in the bloodstream had somehow crossed the blood-brain barrier into the cerebrospinal fluid (CSF). This was a very rare occurrence and he had not had a CLL patient to whom this had happened in his 15 years of practice. <Lucky me.> The result was that the meningus, the membranes that protect the brain and spinal cord, had become inflamed. This was now thought to be the cause of my headaches and of the interruption of signals to my left vocal cord and epiglottis that caused their paralysis. (By the way, I didn’t fully understand all this at the time, but I did get the short form version on this call.) He also told me that he was totally surprised that I was having any CLL-related issues because all other tests had indicated that the CLL was progressing very slowly and I was expected to be symptom-free for potentially years to come.
However, my doctor said, there is a good roadmap to recovery. He had consulted with a colleague at a larger Toronto hospital. That colleague had a large CLL practice and had direct experience with this unusual condition. So he wasn’t operating entirely in the dark. Based on his research, he was very optimistic that the planned treatment would get me back on track, albeit with a few enhanced risk factors due to the ongoing chemotherapy.
The roadmap: I would be moved to an oncology unit, undergo a heavy dose of chemotherapy, including a shot of chemo directly into the spinal fluid <Oh, here we go again!>, some IV steroids to reduce inflammation, then the big dose by IV. Once that was done, I’d be on a different, oral chemo daily for the rest of my life, or as was later clarified, for as long as it works. Since he was not due to be back at work until the following Thursday, one of his colleagues would begin the treatment. He had already called our home number and filled Diana in. That was a relief as her brain was working better than mine and she would have had questions that I wouldn’t be able to answer.
To be honest, while the diagnosis was not exactly welcome, the fact that I now had a diagnosis and a treatment plan was comforting. I was not really comfortable with the idea of being sent home without one, given how debilitating my symptoms were. I would definitely not be a productive member of my family, what with sleeping for 18+ hours a day and not being very well during my waking hours. Other than regular trips to the bathroom and the occasional walk around the unit, I was staying in bed, trying to manage the pain from the headaches and still spitting out a few litres of saliva and mucous every day.
Diana texted me at one point and told me that I’d be getting a call from the oral chemo manufacturer. This targeted therapy is apparently very expensive and needs to go through a special vetting process in order for it to be covered by our public health plans. And that vetting process takes some time, so the hematologist had asked the manufacturer to initially provide the drug for free on compassionate grounds. Shortly after the text, I received the call. The manufacturer just wanted to get some additional information from me in order to process the request. The key question, I think, was whether I had any third-party insurance that may pay some or all of the cost. Satisfied with my negative answer, I was then asked if I would be willing to go through a pharmacy that the manufacturer has a working relationship with, as the process around ordering and receiving this medication is more complex than usual. I had no issue with that, and she told me that the request would be approved but it would take a couple of days to get the order through the system and delivered.
That call was followed by a call from their pharmacy. They offered to deliver the package to my home address, but when I mentioned that I was an inpatient, they said they’d send it directly to the hospital.
I then waited for my call for surgery. The surgeon came by around noon and told me that I’d be called at around 2:30 PM. At 1:30 PM I was given pre-surgery antibiotics. I was more than ready. At 2:30 PM a porter came, took me down to radiology and left me by the CT waiting area. Strange… I was there for about 40 minutes before I had the strength to ask one of the CT staff if I was in the right place. They confirmed, and I was…bewildered. Another 20 minutes and they came for me. “Why am I here?” You’re getting a CT scan. “Well yes, I understand that but I was supposed to be getting a g-tube.” “Hmm. Let me check” He came back and said it was for a scan of my abdomen. I’d had multiple CT scans of my head, neck and chest, and the hematologist had ordered one of the abdomen to check for issues with my lymph nodes. This was part of the staging process for the CLL.
Duly scanned, I was returned to my room. I was not happy with the surgeon. Why the antibiotics? And why hadn’t they bothered to tell the nurses that I wouldn’t be called? It was the first but not quite the last time I’d be frustrated because of poor communication while I was in the hospital.
At least I’d be fed and watered. Just like a potted plant.
Oncology moved quickly. At 9:00 PM I was told I’d be moving to the new unit soon. I gathered my belongings and didn’t have long to wait. The porters came for me I grinned and waved goodbye to my roommate from hell and was settled into my new room before 10 PM.
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