Today we go in for the third to last radiation treatment, hurrah! They switched it up to 39 treatments, why? we don't know but we'll take it so last rad is Thursday this week.
Last week when we went in expecting chemo when we met with med onc doc, Dr. W., he told us that there is no evidence that 3 vs 2 treatments is better in head/neck and he seemed a little concerned about how the rad if affecting James' skin. We were told that chemo amplifies the good and the bad of radiation. It also hit James really hard the first 2 times so without really solid recommendation that going forward with chemo 3 would be beneficial we opted out. Hurrah again!
James and Dr. W. decided that continuing with fluids is good at least this week through treatment. Important for kidney function amongst other things.
Skin is breaking down and surfaces are raw both in and out. We're using lot's of aquafor now and covering a bad spot with non-stick pad to protect. All is very sore. He's been doing his own cleaning in and around stoma and I wait to be called in as back up or when something feels deep. We still have all the suction equipment and James still wears the humidifying mask at night to try to keep things moist and moving.
James himself is moving slow. His appetite is WAY down. He's not keeping up with the 4 ensure a day. He's been trying tiny bites of things but between taste still affected by radiation and surfaces of throat (inner and outer) raw and sore swallowing hurts.
He's lost a boatload of weight and muscle mass but is happy he's gotten through it without having to go back on tube feed. We have cases and cases of the liquid goo if anyone is interested! I'll figure out somewhere to donate...
He still uses opiates for pain. It makes me nervous but we'll work on ditching them once treatment is done. We have other options to test including medical grade marijuana edibles thanks to an angel in the family with access. He knows it's there, I think he's tried it. He gets a little short with me when I talk about meds and edibles and food and lots of other things so I've been taking a slight step back. Trying not to push, too much, for now. We'll figure that out too once treatment is done. This week! Woohoo!
Good things. 3 days left! Coffee still tastes ok (although super hot is not good). 3 days left! We've got this.
This last weeks schedule... radiation today then fluids so in for 10:30 and if all goes well out around 2:30, radiation only tomorrow, radiation then fluids again Thursday, done!
We will continue on with med appts and already have something on the books with the surgeon in a couple weeks. We expect follow up with med onc and rad onc as well. The current relief will be not driving in to the hospital every single weekday. Not setting an alarm. Relaxing. Healing. I'm contemplating taking him away for a couple days, maybe to NH, fishing, we'll see. He needs a little something nice to think about and do, it's time to move on :^)
xxoo Beth and James
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