Of patience, powerlessness and pertinacity

Our latest oncology visit was last Friday. Earlier in the week, my husband had had blood taken for testing. While the doctor didn’t go over the results verbatim or in detail, he seemed pleased with my husband’s progress and authorized resumption of the oral chemo drug Xeloda, though on a one week on–one week off basis, hoping this schedule would minimize chances for more diarrhea. So far, it’s about 75/25, non-diarrhea/diarrhea. In other words, no better or worse. A small victory, I think.

On the plus side, my husband has gained about 4 pounds. While I was thrilled at that, it’s hardly an accomplishment when weighed against the gargantuan amounts of food he eats. Also on the plus side, no c-diff.

But as I shared my worry over the c-diff with you all, a close friend told me of a cure for the life-threatening infection–a fecal transplant. I’d never heard of it before, but the procedure has been around for years, and has been used to stem the infection in humans since 1958, and in animals, for nearly a century.

I continue to observe my husband closely, as our next oncology appointment is a month away, but so far, he’s doing better. Part of the reason for his improvement is, of course, that more nutrition is bolstering his system without constant diarrhea. But part of it is also that I am, in passive rather than aggressive ways, forcing him to do more. I took away the living room couch cushions that raised the bed (den couch) he sleeps on. They were there because he said it was too difficult to gain his feet from the 18″ high den couch when nature called without warning; that the rise to 25″ made it easier to slide onto his feet. Well, that was a month ago. As physical therapists say when encouraging you to exercise, ‘use it or lose it.’  So I took back those cushions, telling him it was only for the daytime hours. He could have them at night if needed.

They weren’t needed.

I also stopped taking care of his fish tanks for him. He has to descend to the basement to do it, and though to date he hasn’t really cleaned his tanks, he IS taking care of the fish and the tank filters. He makes his own breakfast now, even driving to MacDonald’s for breakfast sandwiches and pancakes.  Occasionally he takes the dogs outside, where they play on the lawn and he sits on the front steps. He says he can’t walk around with them because there’s no handrail and those steps are difficult to climb. I must remember to tell him to take a cane.

I prod him in all of this because if I don’t, he lays around and watches TV all day–cooking shows. This too has a minor payoff. As I write, the air is filled with the scent of roasting chicken. He’s experimenting with a recipe which requires him to be on his feet and present in the kitchen for most of the time. Every now and then he scurries into the dining room and falls into a chair, evidence that his strength isn’t up to par, but he doesn’t complain and I don’t offer to take over the cooking duty for him. I try to be understanding, but I’m tired, my own arthritis leaves me to seek a chair every now and again myself, and I don’t like the feeling of being used. I also don’t like that I even think I’m being used. Small of me, yes, but I’m no saint.

I’m also not patient, I think. As this journey that began in April with his inability to eat, and my futile attempts to get food into him, progressed to the cancer diagnosis, hospitalization, and recuperation of sorts–with yet no IV chemo and no idea how long we’ll have to go on like this–I’ve just realized how frustrated I am. I feel like a marionette puppet, my strings tautly held to suspend me in mid-air. I am not in control, and have no way of gaining control. I must follow the doctor’s–and in some degree my husband’s–orders, and while I can investigate options or read about therapies, I have no ability to implement them. Nor would I. I’m no doctor.

Powerlessness.

And yet I persist.

4 thoughts on “Of patience, powerlessness and pertinacity

  1. Of course you’re frustrated! And if that’s all you are then you are a saint. Your feelings and emotions are valid too. Don’t ever think otherwise. Give up the idea of control. It will only frustrate you more that you can’t have it. Just keep on keeping on, because their is no other option. Good luck!

  2. All we really have is now–no past, no future–just this moment. You live in some grace, too. It’s your life and your moments to find comfort and joy in. Even the sad moments are beautiful–and the frustrating ones are huge hints that you need to return to YOU and center yourself in feeling okay. Very tough time for you guys. Very deep lessons. You can only do them one breath at a time. XOXO, Maerwydd

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