In my past endeavors as a long-distance runner and cyclist, one of the challenges I encountered was climbing hills that had a “false summit”. Every so often, you come upon a long, difficult, steep climb, where you work really hard to get to the crest, only to discover that what you thought was the top is only a change in the slope, and the climb continues for some distance after. There you are, reaching the point you’ve set your sights on, and you discover that it’s only partway to the actual finish, and there’s a lot more work ahead.
The time since the end of treatment has felt a lot like that.
For one thing, no matter how often and how earnestly they tell you that effects continue to worsen for up to two weeks past the end of treatment (oh, and by the way, thanks so much for burying that information in week 5 of treatment, guys), the real meaning doesn’t actually get across. What they mean is that they are giving your body so much punishment, it doesn’t all actually fit in to the treatment period. There’s a backlog. Just when you’re “done,” you really get worse.
(I will admit to wondering, in my darker moments, whether the intention is that the patient experience this part of the process when they aren’t scheduled to be in close proximity to those responsible for it, out of concern for the providers’ safety, or whether they figured that making patients also have to deal with going to appointments is just too much.)
Tissues that were already inflamed became more so. Areas that had not previously felt dry or painful started to. Problem spots in my mouth got more numerous and painful, to the point that eating anything by mouth became impossible. Saliva and phlegm got disgustingly thick and ropy. Everything bad turned up to 11.
So we’ve turned up our response as well. More applications of Aquaphor. A humidifier for the bedroom. In an effort to control the phlegm and get control of my fluid balance, I stopped using the relatively high-sodium, milk-based prepared formulas in the PEG, and switched to juice-and-protein-powder mixes of our own devising. Kimberly found a rice protein powder that mixes smoothly, and delivers a lot of body-rebuilding goodness.
I’ve even upped my dosage of painkillers, though I expect to still surprise the medicos.
All of which seems to have worked. I’ve now made it almost two weeks, day by day, night by night. I think I’m at a point where nothing is getting noticeably worse, and several things have started to get better, slowly, from their worst points. I think.
Or maybe I’ve just hit the worst kind of false summit. Sometimes, due to optical illusions and local effects, the road appears to have gone flat, but in reality is just slightly uphill. You find yourself struggling more than you think you should, and you’re unable to understand why it’s so hard to keep going. Aren’t we on the flat now? What’s going on? I thought that was the top. Did the climb take THAT much out of me? It’s really demoralizing.
Overall, I’m clearly getting better, but I’m still in a place where some things seem to be worse, or just different, each day, so I don’t have as strong a sense of “Yay! I’m getting better!” as I would like. The recovery is hard work, and slower than I’d anticipated. Maintaining morale is tricky.
I know I’ll get through this; it’ll just take time and continued “turning the crank”. But if my life were on Tivo, I’d be hitting the button to jump forward through this section.