Storyline: Thinking in Autumn Colours
From the horse’s mouth
Sun Sep 26
It was a horrendous night. At the time, I thought that the huge headache that grew from nowhere the previous evening was because of the laxative I’d been given. I woke at midnight feeling very nauseous and with a headache like few I’d ever felt before. I also felt the need to have a bowel movement, but was unable to. I asked for hydromorphone, but the nurse came back with Gravol (anti-nausea drug). “This one first. Then the pain killer.” Ouch! The Gravol drip finished, but I had to call again for the pain meds. The headache was overwhelming. Finally got the meds, and after finally having success in the washroom, was able to fall asleep around 4am. The good news was that the headache subsided to a dull roar, the left side headache stayed away and I was able to sleep some more.
Mon Sep 27
Over the past three weeks or so, I’d been fortunate in some ways that I’d been able to sleep restfully. Last night was different. No pain. No pain medications and no sleep. Or very little. I’d been worried from the start about getting habituated to hydromorphone but had been told that the doses I was given were so low that this was not a concern. So why didn’t I sleep? Lack of pain? Getting better? Or the lack of opioids? Side effects from the prednisone? I suppose I’ll never know.
Weighed today. 81.6 kg / 180 lbs. Still losing weight while the tube feeding was being ramped up.
And that headache from the previous night. It came back with a vengeance, and for the first time I needed hydromorphone during the day. I texted Diana:
…you can call this chapter CLL fights back. Headache still bad. Nausea. Getting Gravol and Tylenol now. Blah 🤢
Tue Sep 28
This was the morning that I would have the major dose of chemotherapy…methotrexate. The nurse told me that most people have very few side effects, other than swelling. She didn’t indicate what might swell. I had a good night’s sleep, relatively speaking. I was being heavily hydrated so visited the washroom several times overnight. But the headache had once again subsided and I managed another night without pain meds.
One thing that had been bothering me: before the insertion of the g-tube I’d been taken off the anti-coagulant that I’ve been prescribed for years because of the atrial fibrillation episodes that I’d been experiencing since 2009. It was now 5 days later and the anti-coagulants had not been restarted. My cardiologist had been insistent that I take these meds religiously because when my heart goes into arrhythmia the left atrium misfires, over time blood can pool and clots can form before the blood is passed to the left ventricle and pumped from there to the brain. The resulting stroke is one of the main risks of aFib. Today I was going to push the issue with the nurse.
I’d also asked for a speech-language pathologist to evaluate my swallow to see if there was any progress. She came by in the morning and told me that any further evaluation was unwarranted as there was no way that I’d be able to swallow prior to my discharge, and that I should consider my recovery from the paralysis to be a matter of months or more. Disheartening, but I appreciated the honesty. The paralysis was due, they believed, to the inflammation of the meningus and subsequent interruption of the signals sent through my nerves to the epiglottis and left vocal cord. If the problem had been physical (i.e. muscular), they would have a better idea of how long things would take to repair themselves. In my case it just had to be “wait and see”. And hope.
Finally, some action on the chemo front. I already had an IV line inserted into my arm, but apparently the chemo doesn’t play well with others and needed its own line. The original line had been replaced several times during my stay, so I decided that if I were to go back to work once discharged, I could always apply for a job as a pincushion. By 11:30 I was being infused with anti-inflammatory and anti-nausea meds. Hmm…at that point I realized that a little swelling was not the only potential side effect.
I was still waiting at 12:40 when the dietician came by. At least all these visits were keeping me distracted. At that point in time the plan was for me to be discharged by Friday. The prescription for the food had been sent to our local drugstore and was ready for pickup or delivery, and homecare was being arranged to provide a pump, a nurse, a dietician and a speech-language pathologist. I just hoped that all would go according to plan. Which it never does…
Meanwhile, Diana had been preparing the house for my return, making sure that it would be easy for me to get back up to speed; cleaning (with Diliana’s help), shopping, paying the bills, driving back and forth to the hospital, and generally running herself ragged.
The methotrexate drip was finally started at about 1 pm. And it would take five hours, not four. I was also told that the anti-coagulant order had been placed; it would take another day before I was given my first dose. The pre-start process for the chemo was very, very careful. My armband (with name, date of birth, health card number and medical records number, plus barcode) was triple-checked. This was over and above the normal process of scanning the barcode on a medication then scanning my armband and ensuring that there was a match. I was then asked to check that the name on the IV bag was mine before the nurse hung the back, hooked me up and checked everything again. It was comforting to know how unlikely it is that there will be an error administrating a chemo drug.
I’d expected to sleep while the chemo was going in, but the regular routine of the hospital intruded…vitals taken, IV alarms ringing, shift change and intro to new nurse, trips to washroom (did I mention that I have being heavily hydrated concurrently with the chemo?
By text, Diana and I discussed the potential if me now qualifying for a Covid booster shot. I’d have to ask the oncologist about it when he appeared on Thursday.
Diana
As I post this about 3 months after the events, the omicron variant is ravaging the province, the country and the world. Many of us already have the booster shots. As immunocompromised Alex was given one in mid-October and we wonder if he won’t need a fourth dose soon.
Another note: When we started the blog a while ago, we hoped most of our posts will be filed under the traveling section, but for completeness created a placeholder for health, with the hope to have a very few posts in it. There are a few more posts from this story coming soon. I hope after that we can go back to exploring with our winterized Doranya.
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