As we get to the end of March, the end of our St. Jude time starts to come into focus. I had previously made mention that we saw a final appointment date of April 27th in the St. Jude “MyChart” Ap. That date is probably pushed back because Summer’s last round of Chemo was held back a week… But we were still close to the timeline.
Every trip back home requires an extra load of “stuff” to come back from the apartment. Winter clothing is being shed faster down here than back in Illinois and it’s a constant conundrum to figure out what to pack. Memphis is 6 hours south, but the weather can swing between the same as Central Illinois or 20 degrees hotter. Honestly though… Summer just has STUFF! Every box she opens… Every game or puzzle she plays with… Every stuffed animal she is gifted… They add up! I have joked I might need to bring a moving truck when the time comes to move out. I am exaggerating very slightly.
Yesterday was our “busy day” according to Summer. She had a few appointments in the morning and a few after lunch. The morning started a lab draw at 7. The results were back in an hour and I think Angela saw them first. Everything was looking good. White and Red blood cells are bouncing back. Hemoglobin, which has been a problem as she was not eating seems to be doing alright.
The first appointment is with psychiatry. We do not get a report from this doctor. I suppose since Summer is an adult she gets full candor from the Doc. I imagine if you had a minor in the St. Jude program, it would be a tough listen as someone talked about the mental state of your child. Especially since you watch everything firsthand. It would be hard to listen to an outsider tell you more information about how your warrior is dealing with the stuff they don’t want to talk about. I have made mention of all of Summer’s activities and “field trips” whenever she gets a chance to leave the Memphis area… I know they are helpful to her mental health. Especially if she gets a chance to see her old apartment and Geno. Those visits are worth all the effort. I don’t really post about the repercussions.
She is weak! So weak that she got a cramp in her hand from opening a water bottle after we stopped for gas on Monday. She told me she regularly gets cramps in her legs and she can feel how much muscle mass she has lost. (Totally meant to grab her some Gatorade for the cramping when went to Kroger on Monday… Put that on the grocery list for this week!) The trips home and to Carbondale always require a big padded blanket because her body aches after sitting for so long.
We were in Bloomington last weekend and decided to have dinner at Lucca Grille. If you have ever eaten there in the winter… You know that the downstairs dining room gets swept with cold air as soon as a door is opened. They offered to put us upstairs and we gladly took it in the name of warmth. Those stairs. I looked back at Summer and asked if she was OK. She said she could do them… But it was like climbing Everest.
Angela has been wanting to check out a hiking area north of Normal owned by the Parklands Foundation. I have been there once for an ISU presentation on indigenous cultures in our area (shocked?) and reported back that it’s a cool place. Angela brought her hiking shoes just in case we decided to stop by after Lucca. Summer said “no way!” This is the biggest difference for us that is hard to swallow. Our once “ready to take on anything” mentality has been toned down. Countless times on road trips we would stop and check something out, only to end up on a 3-hour hike to an overlook or checkout a riverside trail. Those kinds of adventures are not in the cards for Summer until she builds back up her muscles.
The second appointment was with Terry in PT. We love Terry and he has been awesome about working with Summer in her good weeks and bad. He even comes by the acute care areas when she is laid up in bed to check in and make sure she is doing OK. He mostly works with balance and hand-eye coordination type activities. His job is not to push her, but to make sure she is stable and continuing to work on her right hand.
After that, we had lunch hour. Summer grabbed a bagel and an oreo shake from the “bistro” on the new level 2 family commons area. I didn’t eat, more on that below, as I really wasn’t hungry anyway. Summer demanded I take a drink of her shake. It was good!
Afterward, we headed to the Brain Tumor Clinic and Summer met with her dietician. Everything on the eating front is going well. This lighter phase of chemo has not affected her food consumption. She has been eating well and we don’t find ourselves using the “body fluid” bags as we used to. Thank goodness!
Summer then met with her doctors and they ran over the numbers. They were improved… Like we had already seen on the app. They said that she can hold off for another lab test until next week since she was not due for chemo this week. (It’s every 2 weeks right now). This was awesome news! As we walked away… I asked her if she was going to get her port removed since nobody needed to access it for the week. Duh! Yeah, let’s get that pulled!
I ran to the cafeteria for some bottled water and bananas while she got de-accessed. The weather is wet and cold right now and I had nowhere to park when we arrived after 9AM… So, that meant we had to use valet this morning. I hate to use this service. I like to get the car and go when I am ready. We then waited for 30 minutes for the poor valet parking guys to get our car from across the St. Jude campus.
The last time I was here, I clocked a record low “steps” on my Garmin watch. 1700 steps for a whole day! It’s little wonder that this past year has been a nightmare for my physique. When I was chatting with Dad last weekend, he said he gained 4 pounds while in Memphis with Summer. It’s easy to do. St. Jude has tons of free food for families and caregivers along with whatever the kids want. I started making my own meals here months ago when I made the command decision to stay away from the hot breakfast counter at the hospital. Biscuits and gravy, omelets, and all the hashbrowns I can eat are very tempting… And some of my favorite things… But they are a killer on a body that sits all day in waiting rooms!
There was a time, months ago, when we would go to the cafeteria for breakfast, lunch, and dinner. It seemed easier than making food in our housing. To be fair… Tri-Delta, the temp housing… Has no cooking available, so you are eating at the hospital a lot when we were there.
This far into St. Jude, I generally stay away from the cafeteria at lunch as well. St. Jude Target House gets a lot of donated dinners at night… And a lot of them are BBQ or Fried Chicken. (Last night was a place called Peggy’s. Fried Chicken, Collard Greens, and Sweet Potatoes) I am never going to turn down Memphis BBQ or Fried Chicken. Not gonna do it! So, eating my tofu, eggs, and spinach breakfast in the morning and maybe grabbing a banana or two for a midday snack is probably the best routine I have found (for me!). Everyone is different and I can understand the desire to throw down some of that amazing cafeteria food! Don’t get me started on the piles of cookies, snack cakes, and ice cream in the fridge!
It looms heavy on me! Mostly because I don’t know what to expect. Will Summer be up and ready for a road trip? Will I regret not getting tickets to Alaska? There are lots of variables in treatment and we wait for the MRI with a bit of anxiety knowing it will dictate our actions over the coming months and years. I am the king of flying by the seat of my pants… But this even has my brain strained!
Summer told me that she and Nate were thinking about a road trip themselves because I have not been very convincing on making plans myself. UGH. More pressure. I probably need to block out dates in August and just plan on doing something. She also told me that she bought tickets to Deckland McKenna (probably spelled wrong, but I am not looking it up for fear of what it will do to my search history!) for her and Nate to go to. She also has Bonaroo Saturday tickets for the end of June. Oh, and I have a family 4 pack of tickets to see the EELS in Chicago the week after Bonaroo as well. We are covered this year for concerts!