St. Jude – Thursday.
Summer had an early start today with blood draws at 7:00 this morning. Thankfully, she can get them here at Target House so it was just an elevator ride to the main floor away from her bed. Pajamas are considered appropriate attire for these appointments. She went back to bed for a bit till we had to leave for her 8:30 appointment with physical therapy. She came out of that one hot and perspiring. She said she had to do squats today-lots of them! She said “I know they are good for me, but I still don’t love doing them”.
Next was her appointment with her nutritionist. She was happy with where Summer is at right now. Summer lost a little weight again, but nothing to be concerned about. She asked Summer about nausea, her appetite, size of meals, and more. Summer told her the appetite stimulants they prescribed for her are helping her to eat more, but she still has to really mentally focus on it. She convinces herself to eat even though she has no real desire to. She can only eat small portions at a time and then knows she needs to stop or she will get sick. The nutritionist said she will leave the prescriptions at the present levels for now, but told Summer to let her know if she feels any changes as they will probably need to be adjusted higher in the not too distant future.
Next was Summer’s nurse. She told Summer that her lab work numbers came back good overall. Some of her blood counts were lower, but they were as expected with the amounts of chemo and radiation she has received. The skin burns Summer had been dealing with on her face and head were much improved from last week, so the creams they gave her are working well. She told the nurse the constant fatigue is her biggest problem. The nurse told that unfortunately, that is part of the process. The best news she gave Summer was that she is free to go to Carbondale again this weekend. Always the good news to hear on a Thursday!
One of a Summer’s doctors was the third part of this department visit. She told Summer that she only has three more of the chemo with radiation treatments left to take after today for the completion of this stage of her cancer treatment. Summer’s last three days for these are Friday, Tuesday, and Wednesday. She will then have five weeks off to rest before the next chemo phase will begin, the second part of October. Angela is returning to Memphis next week with Summer, and the medical team will meet with the two of them on Tuesday to discuss specifics. She then got a calendar and used it to give Summer an overview of what she can expect for treatment timing over the first part of the seven months of treatment. Some parts will be given in the hospital and parts as an outside patient. It was mind boggling to me! So much information all at once. She gave Summer a lot to think about. Nothing was “sugar coated”. This appointment lasted longer than scheduled, but I so appreciated this doctor taking the time to explain all of this to Summer to have a better understanding of what lies ahead for her.
We hurried to her occupational therapy appointment, but arrived a few minutes late. They took her right in, and kept her a little longer than scheduled. Then we had to get to her chemo appointment, and we were a little behind there as well. She went into get her injection by herself today. This meant Julie and I sat in the “Medicine Room” longer than normal today. This is the term they use for the chemo waiting area. I told Jule I think it’s the saddest room in the place, because almost every patient looks very sick. They all look exhausted, and their skin tone/color is off. Many get chilled and are wrapped in blankets. The younger kids sleep across chairs, and the babies sleep in their wagons. Barf Bag stations are posted around the area. The parents look worried and fatigued. I was happy to see Summer come out after she was done so we could move on.
Time for lunch at this point. We got our food and found a table. Summer was more quiet than she had been. I asked her if she was ok. She said she was as good as she could be. We probed a little further. To summarize here for a minute, she told us she basically feels overwhelmed by everyone being so close to her. She feels like a small child with every move in her day being checked on and scrutinized. The constant questions over and over every day. How much did you eat, did you drink, did you sleep, did you pee, did you walk, did you whatever. The hovering over her gets to her. She misses school and her friends. Living in Memphis right now was not a choice she made, but it’s where she needs to be. Looking ahead on the calendar didn’t show her that life ahead has much time for fun. We were not at all surprised by what she said. We assured her that we understand, but we really couldn’t come up with much else to change any of it. I honestly feel like she has done an amazing job of keeping herself together through all of this. The mental part of all of this has to be just as hard as the physical…
Summer’s final appointment was for her radiation treatment. We went a little ahead of her scheduled time, and they got her in a little early again today. She came out of radiation looking tired, and said she was ready to head back to Target House for a nap. I was dragging today too, so I slept as well. Jule did three loads of laundry while Summer and I were snoozing. I got up and helped do some tidying up and began to pack some things up. We will head north after Summer’s last appointment tomorrow. We had a light dinner and watched a movie together again. The last four days here have gone by quickly.