New challenges
Overnight Tuesday-Wednesday, Wes was admitted through the ER with a high temperature. This wasn’t totally unexpected – this phase of treatment has been difficult, with new chemo drugs that have left him frequently (and unusually) nauseated, as well as seeing various hints of vincristine neurotoxicity including a few scary days where he couldn’t walk safely on his own. On Monday he had the last LP (lumbar puncture, aka. spinal tap) of this phase, and his various blood counts were already on the decline – good enough for that day’s procedure, but unlikely to do anythng but go down from there considering the predictable reaction of the LP and his daily chemo. Superficially, the challenges of this phase are evident – he lost his hair again rapidly, and almost completely.
For more than two months now he’s been struggling with constipation – not an entirely unusual side-effect of more than one of the drugs he gets regularly. We’ve tried everything from diet shifts where possible – we miraculously cut down his milk consumption by 90% – to daily regimens of various laxatives, and while he’s been able to evacuate his bowels, it’s gotten increasingly difficult for him. Recently, it’s been painful, and we’ve been concerned and raised the issue repeatedly with the team.
This week’s admission has given the nurses and doctors a close-up view of his struggle to shit – mostly it was anecdotal until now, and I don’t think it ever fully clicked that it wasn’t just him being stopped up (in fact, that wasn’t the worst of it) – it’s been a downright painful daily, sometimes hourly, ritual for him. Thankfully there’s been no blood, good consistency, etc. – in particular because this week his immune system is so weak that if he was having some kind of internal bleeding or infection his immune system would be too weak to repair himself.
After repeated conversations with the team we honed in on a good working theory – that this is another symptom of the vincristine neurotoxicity we know he’s been experiencing in other ways. As an immediate measure, they megadosed him with just about every kind of laxative and digestive aid they have at hand and it’s cleared him out, but he’s still experiencing pain and struggle and that doesn’t really address the underlying issue – a potentially dangerous response to one of the most common chemo drugs he receives.
In the short term they are going to skip his next vincristine dose, scheduled for Monday, to give him a break. This shouldn’t have any impact on his prognosis. Longer term we have more than two years of treatment ahead which will include regular (weekly or monthly) doses of vincristine, and as we understand it the effects, and side-effects, are cumulative, so they’ve got to find a way for him to cope with it. Eliminating vincristine entirely from his protocol is not an option as it plays a critical role in maintenance. This week they should be starting him on gabapentin, which may help to disrupt the pain he’s experiencing. So far there’s no indication – in his labs, or in his symptoms – that there’s a larger issue with his intestines, so this could be enough.
Yesterday he got a much-needed blood transfusion, which should give him a renewed vigor. His color and attitude were instantly and massively improved, enough that they gave him the afternoon off the IV so he could move around freely. He gets used to the “sheen” – the IV machine we have to drag with him everywhere – but being untethered from it, even for a few hours, is pure joy for him.
He had labs early this morning and we’re waiting to see how his numbers look – they should start coming back up soon, but we have to be patient. Even if he’s doing well, it could be a couple more days there. Meanwhile we are all making the best of it – I’m getting ready to go on my first business trip of the year (and returning to work finally) on Sunday, and Stephanie and Ruth are staying fulltime with Wes until he is released. I hope they are out before I leave, but I’m not holding my breath, and am visiting everyday while I can.
