Everyday we get up, get dressed, and care for the pets. I put a load of whatever clothing, towels, or blankets JJ has used over the night into the washer. I make sure we have everything we need in our bags to take with us. Then we load our bags and ourselves into the car, stop briefly at the post office for our mail, and drive off to the Cancer Center. At the Cancer Center, we wait in the main waiting room until Chris cheerfully calls us back to the Infusion area. Often a group of us all goes back at once. Chris always checks JJ’s “vitals”–his blood pressure, temperature, and oxygen levels. Then he brings us drinks–EJ and I always request coffee while JJ usually just asks for water, although yesterday Chris talked him into his special hot chocolate. After Chris leaves, the nurse comes in to hook up Jared. Most of the nurses know now that “Mom” has to leave while JJ is being hooked up. If a nurse tries to tell me that it’s ok to stay, both EJ and JJ chorus, “No, she really needs to go…” After JJ is settled, I come back in and, depending on the time of day, EJ goes off to the cafeteria and brings back food for us.
It’s beginning to feel as if we are living the same day over and over, like in the movie Groundhog Day. There are a few minor variations to our day, but the routine is pretty much the same.
Today we had to be at the Cancer Center at 9 a.m. We were put in Infusion Room 8. This is the biggest room yet, and we didn’t feel as if we were sitting in each other’s laps. This is a two-person room, but we were the only ones in it until our last hour there. There was a window, which I always like. because I like to see the outside world.
This morning the PA system called for an adult trauma team to the Emergency Room, and also for a pediatric trauma team for multiple trauma. We suspect they were in an accident. I prayed, and I’m sure EJ did too.
A lady from the American Society stopped by our room at about 10:30 with Christmas treats. She also told us about resources that are available to us for free. There were delicious looking cookies and fudge and chocolates at the kitchenette counter. I took a couple in the hopes of tempting JJ to eat something. He said he didn’t want anything, but I left the cookies within his reach and he nibbled one until it was gone.
At the end of every day, JJ has to decide whether to have the nurse take the needle out of his port or not. If he keeps it in, he can’t take a shower at home and he has to be careful about his sleeping positions. However, it’s easier to hook him up the next morning. If he has it taken out, he can take a shower and it’s easier to sleep but he has to suffer the needle being inserted into the port again the next day, which can be uncomfortable. It’s really quite a terrible decision for him to have to make, with neither choice being entirely pleasant. JJ often asks the nurses what they would suggest, but they say it’s merely a matter of preference and they can’t make the decision for him. The first two days JJ decided to keep the needle in. Yesterday he chose to have it taken out. This morning he took a shower, but then he had to put a cream on the port site to deaden the area so the insertion of the needle wouldn’t be uncomfortable. I asked him later if it was uncomfortable this morning, and he said, “Not really.”
When the nurses ask how he has felt overnight or how he is doing today, he always replies, “I’m good.” I’m becoming more and more a Mama Bear. I translate “good” into the truth because the nurses need to know what he’s feeling so they can help him: “JJ had a rougher night last night. He’s feeling less well and struggles a bit more with nausea. His appetite is minimal…” We have to remind and cajole him to eat. He’s very tired. His smile is rarer. I had to fight back a few tears as I watched him sleep.
JJ continues to thank the nurses each time they care for him.
We left the Cancer Center at about 2:30 p.m. this afternoon. One more day to go before the weekend. There is no Chemo on the weekends.
At home, we did our chores. I baked some homemade potpies that I had made a frozen after Thanksgiving. I also baked some tatertots. JJ ate them all.
We really are doing well through this, facing things as they come, joking when we can, holding on to faith and hope. However, I am determined to describe what each day is like for a cancer patient and his family.