Today is day 4 post transplant and Dan is hanging in there. The last few days have been a "coming down" of sorts from the excitement of the infusion and a reality check that this is going to be hard. The morning after his cells were infused the side effects began to show themselves, but we were high on adrenaline from the night before. Each day Dan has experienced a slow decline in strength and we are learning about the most notorious side effect - mucositis. I hate mucositis. It is a very painful thinning and inflammation of the mucosal linings in the mouth through the digestive tract and right down through the other end. As you can imagine, it is becoming difficult to eat, swallow, and talk. Dan can't support his own nutrition now through eating so he's hooked up to some IV nutrition and hydration. This is totally normal and even expected with the treatment he has had. Dan's nurse hooked him up with a PCA pump with a personal morphine supply and a button to push whenever he needs some relief. As usual, Dan is impressing the doctors and nurses tackling at least 3 walks per day, sitting up out of his bed, and rinsing his mouth out more than they ask. He's also simply being Dan, which is making our room a pleasant place to be. We've made friends with our nurses and are passing the time watching movies and, of course now that it's the weekend, football.
I learned the hard way what happens when you don't eat or sleep right for a week straight - you catch a cold and get banned from the transplant floor. I had to make myself scarce for a few days and leave my husband in the hands of the nurses; no offense, but I bet I can get him to rinse his mouth and take more walks than they can! I pouted for a bit but was convinced that I had to go. With the moral support of my caregivers, my mom and sister, I rested at home, bought some multivitatmins, drank a gallon of orange juice, and whipped myself back into shape pretty quickly. I've been sleeping at home now and making sure to keep myself healthy so I can be the best caregiver I can be.
Things are getting harder but we still continue to look forward to the engraftment and life with new marrow. I think the next 10 days or so may be a blur of naps, walks, rinses, and morphine for Dan, but he'll get through it and so will I. We're really looking forward to a visit from my mom next week to help pass the time and rejuvenate our spirits!
Thank you, as always, for Keeping up with the Lyons.