Day +8

It’s still surprising to me how quickly things change; a mere three days since my last post, and Scott’s routine looks much different. I provide this update from second hand experience as schnuggling a baby down with the flu has meant I have been unable to be at the hospital with Scott since Friday afternoon. But rest assured I have been given a thorough rundown from Scott’s Uncle David on the happenings in room 13, so here goes:

After a couple not so good ones, he had a decent nights sleep last night, and was able to catch a few hours at a time of fairly restful slumber. This is thanks to some heavy hits of pain management drugs, and effort on his part at figuring out what works best for him. A fan, new pillow and in-room tv have offered a surprising amount of relief/distraction. 

His mucositis has worsened, as expected, in response to additional doses of the drug prescribed to decrease the threat of Graft-Versus-Host Disease (GVHD). What is mucositis? According to the Oral Cancer Society it is “probably the most common, debilitating complication of cancer treatments, particularly chemotherapy and radiation. It can lead to several problems, including pain, nutritional problems as a result of inability to eat, and increased risk of infection due to open sores in the mucosa.” Imagine really bad canker sores, all over your mouth, swollen gums and throbbing pain. It’s terrible. And while he was warned, and more or less promised that to at least some degree it would happen to him, I don’t think he could have prepared himself for it. Despite a great effort to choke down protein shakes, and small meals, the pain is making it increasingly difficult for Scott to eat. In response to a dramatic decrease in caloric intake, his dietician has recommended that he increase his protein shake count from 4 to 8-10 per day and supplement with other weight maintenance tools. That’s a lot of whey. It is so essential that he keep eating, to help his body recover and to diminish the chances of GI issues in the short term and large muscle mass loss as he did last time. 

As his primary caregiver, I will always be his advocate and make sure to look out for his best interests. I have no problem bugging nurses for extra pillows, asking repetitive questions until we understand a treatment or medical strategy, and pushing for the “secret” room service menu for his meals. I’m always on his side. But sometimes being on his side means encouraging him to accept or do something he doesn’t want. Right now, that is a feeding tube. Does any 32 year old man want to receive nourishment that way? Of course not. But it’s not always about what a patient wants, but what they need. Ultimately it’s his call… It’s not like he’s not capable of making his own decisions. Scott may be dopey but he’s not unconscious! Though the tube is becoming more of an immediate reality, as he feels worse, eating gets harder and the window for inserting the tube closes.

At day +8, with the possibility of engraftment as early as +14, it’s encouraging that healing and natural relief is drawing nearer. Now, if our kids could get and stay healthy so it’s safe for me to visit my brave, strong husband again, and pass on their air hugs and kisses, that would be great.