Living with cancer
We’re back at home but our routine is far from normal. We’ve gotten into a kind of (almost) comfortable daily routine. Ana takes her pills each morning with water and a gogurt chaser. She cuts some of them up into tiny little pieces (the hospital sent us home with a pill cutter). She only needs a few pills in the morning (Prilosec, Prednisone, and an anti-fungal called Diflucan). The Prilosec is a capsule and is easy for her to swallow, but the other pills are not coated and it took her a while to get the hang of taking them. Jim gives her the infamous shot at about 11:00, then she’s done until the evening when she takes more Prednisone and her anti-depressant.
We also have to flush her ports three times per week which is what the visiting nurse showed us how to do on Tuesday. She’s due for the flush again today. The dressing over the port needs to be changed once a week as well.
She’s been busy writing and decorating Thank You cards. This seems to be a good outlet for her and we took a trip to Michael’s today to get some blank cards since she went through the package of about ten or so we had on hand.
Ana’s appetite is pretty good. She’s eating three meals a day and snacking a bit. She loves TCBY frozen yogurt (mint chocolate chip). We’ve already been to the one in Kingston twice since she was discharged. I bought a huge container of the mint-chocolate chip (she had two bowls yesterday). It’s yogurt, so it’s healthy, right? Her weight was up a bit on the scale yesterday (nearly two pounds, actually, and I’m hoping it holds).
We’re sort of in between worlds right now – not living at the hospital, but not really part of life as we (used to) know it. My friend Kiku is going through her own battle with cancer and she described this feeling as being “off limits to the planet.” You can’t really plan, you can’t really live your life, your days are spent focused on the illness (or trying not to focus on it) and all the new responsibilities that go with it. For example, I spend 30 to 45 minutes a day on the phone with CDPHP. I talk to them more than I talk to my mother. It’s also also no picnic trying to work with the Kingston City School District to get Ana a tutor.
I can’t expect everyone and everything to freeze in time along with us, but I can’t help wish that I was in the same place as everyone else. You know, the place where I don’t have to watch my 11-year-old slowly lose her hair, and learn how to take pills meant for adults and quietly cry every morning as she gets a shot. Because I won’t lie – being in this place really sucks.
But this is what it’s like. Living with cancer.