We have been home for a week now and are adjusting to our new normal. Family and friends have been helping with errands and keeping the kids busy. The home nurse visits every few days. Simon has an abdominal catheter for fluid build up that I’ve been trained to drain as needed and the nurse commended my thumb control skills for consistent flow. My expectations for anything have gotten so low in the last month that I was embarrassingly proud of the compliment.
Simon spends about half the day sleeping and the other half visiting with friends or using the iPad. He needs to get up more but he is still battling swelling in his lower legs and feet. The pain is very well managed now so mobility is one of our next projects to tackle. But before that, it’s diet. Simon has lost about 15 lbs. in the last few months. He was already so slender, so he has been put on a high, dense calorie diet. That’s why we keep declining meal offers. I’m trying to slim down yet we’re trying to fatten Simon up. I wish I could transfer some of my reserves to the poor guy. For lunch today, I had half of a Trader Joe’s Asian Slaw Salad. He had nuts and a milkshake made with whole milk, Ensure, eggs, and ice cream.
He also began the one FDA approved drug that can slow tumor growth today. His oncologist will be monitoring him weekly to make sure his body is tolerating it. It can take months for positive, noticeable results, but the adverse effects could happen quickly. His lab results from this week were very solid. The doctor called me and we chatted for about 10 minutes. Simon is young and his body wants to compensate for this disease. His kidney function is strong, his hemoglobin is improving, and his remaining good liver function keeps surprising the doctor, considering the liver is riddled with tumors.
So we wait. We watch. We monitor. We laugh. We fold laundry. We eat – some of us less, some of us more. We pray. We chat.
Annnnnndddddd, I take pictures. He slept a lot today, so that’s all you’re gettin’. And burglars, take note of his splintery baseball bat in the corner. You do not want to mess with this house.