Wow, 4 weeks without an update. This one’s a doozy.
Things started out just fine, Friday’s radiation was normal, we had a fairly quiet weekend. But by Monday she was feeling pretty run down and we were starting to worry about her (lack of) fluid intake, so we met up with Carolyn, her Nurse Practitioner, who topper her up with an IV. That helped for a while, but by Tuesday evening she was feeling poorly again, and a fever showed up Wednesday morning. Protocols dictate that anything below 38 degrees is nothing to worry about, but by mid-morning it has spiked to 38.3 – time for some action.
We went straight to the cancer centre and they wasted no time hooking her up to an IV and pumping a litre of saline into her. Blood was drawn for standard work and to cultivate some cultures, and by mid-afternoon she was on IV antibiotics. It was now becoming increasingly obvious that they would admit her to the ward on the 5th floor – and the policy was that she would have to be fever-free for 48 hours before release. Given that she was still feverish so late in the day, a Friday discharge seemed unlikely (I’ve since learned that they don’t discharge on Fridays at all) so we were looking at Monday at the very earliest. I’d been sending texts out to various family members and had just received work from her Mom on Mayne Island – she was on her way.
Around 5PM she was moved up to the ward – in a temporary room until hers was ready – and various doctors and nurses came by to assess the situation and reassure us as to what was going on. Then Josie showed up and decided that she’d spend the night in the room with Siobhan and I went home to try and sleep.
Thursday morning I was back to take over, and she looked much improved. Still not much of an appetite, but the small kitchen they have there was pulling out all the stops to find her something she liked. Radiation went off without a hitch and later in the day Doctor Cooper came in and said that yes, her blood cultures had bloomed and she was positive for a bacteria in her blood stream. They hadn’t narrowed down which one yet (we later found out it was pseudomonas) but this would mean 7 days of IV antibiotics (currently the broad-spectrum imipenem). By the time evening rolled around, things were looking up. Moods were improving, there was general perkiness. It seemed like a corner had been turned. I went home to get some sleep (ha!) and Josie took over the night shift.
By the time I got back Friday morning things had gone downhill. Overnight the fever had climbed, nausea came back with a vengeance and, well, other symptoms. This wasn’t the recovery we were hoping for. We took her down for her radiation treatment, but then skipped the weekly consult with Doctor Wu – back to bed and a nap. By the end of the day her medical oncologist Doctor Knowling, her radiation oncologist Doctor Wu, her Nurse Practitioner Carolyn, and the weekend on-call doctor had all stopped by and talked about how everyone was working hard to identify what was going on and that while hers was an extreme case, there was nothing happening that was beyond the norm. As Doctor Knowling said, she was an “interesting case” – not really something you want to hear from an oncologist.
Saturday started out fairly routine, I relieved Josie and spent the better part of the morning with her, the left to get some lunch and take care of some errands. Heading back, I checked in to see if anything was needed and all was good, but when I arrived, this was on her door:
Turns out they found another bacteria strain. And this was was fairly resistant and we would have to make sure it didn’t spread to other patients on the ward because they all have, to one degree or another, compromised immune systems. Clostridium difficile was the culprit this time, which meant putting her on flagyl and it also meant that all her visitors would have to wear gloves and gowns. At this point it was decided that I should take the night shifts (because of C. Diff no one else could use her bathroom, so it would be easier for me to be there at night) and Josie and Sarah and Nym would divvy up the day-shifts.
This was the case over the weekend, but on Monday it was decided that she should be moved to the Acute Treatment Area at VGH (the Cancer Centre and VGH are connected via an underground tunnel) as they could provide better care for a case like hers. So we packed up her stuff and trundled off to the real hospital. They had a private room waiting for her (10th floor, spectacular view) and a medical team ready to go. So more antibiotics and that evening down for a CT scan to see if they could find out where all this bacteria was coming from.
The scan revealed colitis, not unusual where C. Diff is involved, but nothing else untoward. The rest of the week was quickly becoming routine, antibiotics, fevers, nausea, doctors, nurses. On Wednesday night she’d had enough of her hair coming out in clumps, and told me to get some clippers the next day.
Josie gave her a pixie cut in the afternoon, and that evening I showed up with clippers and finished the job.
Friday morning started out like some many others recently, but not long before I left she said she had a “funny, serious” question to ask. Yes, shortly before 7 AM on November the 14th, after being together for almost 13 years, Siobhan finally proposed. We’re going to get married in June of 2015.
Other than wedding planning, the rest of the week was much of the same. Tuesday night was another CT scan which showed that the colitis was responding nicely to the drugs. But while this was an abdominal scan, it included the lower portion of the lungs. And there were spots in her lungs. We were reassured that there was no way this could be either cancer nor TB, but this did mean another CT scan that would focus on the lungs to try and get a better look at what was going on. And it was late this week that it was decided she needed a feeding tube (specifically, a PEG tube). On Wednesday she was put on further restrictions – in addition to gloves and gown, we would now have to wear a mask in her room, to avoid the possibility of air borne infections.
Before the PEG tube, she had an NG tube inserted. This was essential for the PEG insertion. By now we had the results of the chest CT scan, and those pictures warranted a bronchoscopy so they could get a close look at what was going on in the lungs and take some samples for cultivation.
The bronc was performed on Monday morning and by late in the day, they’d determined that it was definitely a fungus and put her on an anti-fungal IV immediately. Within a day there was a noticeable improvement. Fevers were reduced, she was markedly perkier. But most tellingly, she was getting bored. Nothing says getting better like being pissed off at being in the hospital. Things are looking up, and we’re optimistic again.