I had originally titled this post “Tired”. I am not sure we are tired physically as worn down mentally. I know we have a long way to go, but the past few weeks with multiple surgeries and the ups and downs of meds have us all over the place. “Ready to go home” is the corrected title and is far more fitting!
I thought today was going to be a breeze. No needles and Summer was on the mend from her surgery yesterday.
Our first appointment was later at 9:30 so we had time to eat at the apartment if we chose to. I made my potatoes and egg and waited for her to get out of the bathroom. When she got out, I fully expected she would want a pop tart or something. No, she wanted an egg and potatoes. I am happy to oblige. I whipped up some more breakfast. (oh, if you want to keep up with the latest going on while I am with Summer at St. Jude… Follow my Instagram stories. Bonus, get pictures of food, games and sometimes a beer) Instagram: @planetstahl)
Afterward, we started looking at the mountain of meds that were supplied to us yesterday after surgery. I didn’t mention this in the previous post, but I probably should have. After surgery, they told us to pick up some painkillers at the St. Jude pharmacy. We headed down and were shocked to get a large grocery bag full of meds. Most of them were painkillers and antiulcer meds. But a large percentage were injectable fertility drugs. We still had pain meds from Summer’s second brain surgery at LeBonheur 2 weeks ago. She never had us pick them up. She had some leftovers from CARLE and she, like everyone in our family, seems to do better with pain than the prescriptions are queued up for. We told them to take those meds back. No reason to sit on more meds as it seems like we will have an endless supply for a while.
Summer complained that she felt like an “old lady” again this morning. Meaning she can barely move. Her head was hurting and her right side is very stiff where she had yesterday’s procedure. She sat down and looked at the pile of meds while I cooked. It was decided to try another transdermal patch behind the ear for her unsteady walking. She also hit some more pain meds for the headache that has been lingering since the spinal tap. They say that this is normal when you remove fluid from the brain, so meds were prescribed. Tylenol etc.
We headed to the optics area and it was just a consult that gets a baseline on her ability to see. A regular eye exam. Everything you would do at home with your eye doctor along with a dilation.
I sat out in the waiting room. For a little kid, this might be something a parent needs to be involved with. I started working on payroll and tried to sort out a “reel” on Instagram for Fort’s. I had it halfway done when Summer came out with the doctor. She feels terrible. So much so that she wanted to skip child-life (a catch-all term for the 20+ youth group) at noon. I brought her home to the apartment for a 90-minute snooze.
At 1 we headed back for 3 more appointments. Nurses to talk about caring for the port. Dental exam to make sure her teeth will be ok during chemo (it’s hard on the gums) and a final consult with Dr. Ke about our fertility appointment tomorrow. All the while today, she was holding onto me pretty close. I could tell she was still in a painful state.
It was kind of early to eat in the cafeteria. We walked over anyway to see if it was worth grabbing and taking back to Target House. The food was the same menu as we had a week ago. Some kind of Asian Chicken recipe with rice and egg rolls. Meh.
I convinced Summer that we should go out. It is our last night to hang out for a while if we get to leave tomorrow evening.
Somebody from Angela’s work had donated Fandango cards… Thank you whoever that was… We booked a showing of Elvis at 6:45 a few miles away. I was scrolling around the theater area to find someplace to eat when a Gus’s Fried Chicken showed up nearby. Nate and I had talked about Gus’s and how we should do a tour of fried chicken in Memphis. … “Summer, can we please go to Gus’s Fried Chicken?” was my plea. Why she abided, I have no idea. She’s a chicken nugget kid like everyone else in her generation.
We stopped at Gus’s and I got a 2 piece dark meat with beans and slaw. I paired it with a nice Yuengling Lager. Summer got 2 chicken strips and Mac n Cheese. It was all delicious. But, they have no options on their spices.. So Summer had to deal with more heat than she would normally order.
We went to Elvis and left satisfied. Tom Hanks was pretty good, I thought he was still too sympathetic of a character at the end. I think this is a movie you need to see in the theater if you appreciate sound and production. I love Baz’s (Directior, writer etc) work, and the shooting style that you have come to expect from his movies like Moulon Rouge, Romeo and Juliet, and The Great Gatsby was in full display. I actually really liked it for the style points.
Tomorrow we have a remote meeting at fertility and a few afternoon appointments that run till 4PM. AS OF RIGHT NOW, no appointments on Friday.
Summer did say earlier today that if she felt as bad as she did earlier today when it comes time to leave for Illinois… We might have to wait it out a day. She said the pain in her chest was excruciating with every bump in the road. I thought she seemed better as today went forward but she was still clutching onto me just to keep steady as we left the theater tonight. But, Summer has a strong will and I think we will be in good shape to get home.
Oh, the question did come up. When we rotate out and Angela is here a couple of weeks starting Sunday… Whos blogging? Probably no one. Sorry. I will do updates as I get them. But it’s a lot easier to write about the day when you are here. Angela keeps a paper journal but I suspect that will never be shared. Probably ever!
All food pics today? Summer was holding onto me pretty well today. Usually, I am dawdling around somewhere and snap some pictures of her or whatever. But she was not in a mood to deal with me sneaking a picture here or there. So, enjoy the food.