I’ve stayed quiet on Mark reports out of respect for the holidays. We have had many happy moments with the kids, and so much good food. The tree was the best it’s ever been, we have this adorable rental dog, as I affectionately call her and as you have perhaps seen, to distract us. Now the Pittsburgh grey skies have set in to hold us captive til about April. Mark is on week 4 of radiation. He just completed another 11 hour day of radiation and chemo yesterday. The side effects are setting in on schedule. He is exhausted and a tad confused. He’s having a harder time swallowing. That’s because the radiation zaps the salivary glands and makes his saliva thicker as well as reduced. His vision in his right eye is declining again. That’s because that pesky tumor is hanging out right by his right optic nerve, and even the fanciest of radiation machines and the most skilled of docs and technicians can’t dose the tumor and not the nerve. He’s having a harder time hearing. That’s because the chemo drug, cisplatin, can accumulate in the ears. To try to move more carefully down the rabbit hole of hearing loss, we are switching him to once a week smaller doses of cisplatin rather than a whopper dose once every three weeks. That means more 11 hour days at the hospital, but keeping a more careful eye on his hearing. He has no appetite, and while I am getting pretty good at sneaking calories in (if I offer you a shake, unless you want it made with high calorie Ensure, PB 2 powder, and half and half, you should decline), he’s still losing weight. That’s because the radiation causes enough cellular havoc that his calorie needs are even higher than normal. He’s cold all the time, and all his Christmas presents were about heat. Electric blanket, hot packs, neck warmer, portable heater. The more uncomfortable Mark gets, the less easy of a patient he becomes. Sometimes the only person that can get him to take his meds is Michael. It makes me worried for Michael as scenes like last night’s play out, with Mark very confused and refusing his meds and Michael and I together having to figure out how to convince Mark to take them. That’s a lot for a 19 year old kid. All these facts lead to one obvious conclusion: things are hard, and they are going to stay hard for a while. Maybe all of the grey sky season. All we can do is accept it and keep going. One foot in front of the other. Ever onward, Diane
