Incrementally Adding Complexity

At a time when I think all of us are yearning for some simplicity in this world, Roy’s body keeps unveiling complexity – a beautiful, but perplexing, interconnectedness of systems. Our modern medical specializations would lead us to believe these things can stand alone, when really, they simply cannot. It’s all connected. When one bit goes awry the other pieces feel the impact of the imbalance.

Roy’s physical therapist visited on Monday and asked that a cough be escalated to the doctor for attention. A cough is not a simple thing when you are having immunotherapy and it requires a medication. One has been acquired and added to the daily dosing. Roy is no longer attempting to dislodge one of his lungs on a regular basis thanks to a prescription for Mucinex.

The nephrologist at Methodist looked over Roy’s records and immediately messaged to stop taking a prescription he’s had for ages for his liver because it was making his electrolytes go out of whack. After stopping the spironolactalone, Roy has been feeling incrementally better. The nephrologist also got Roy in two weeks earlier than previously booked – so we took a very early trip on Wednesday to the medical center and conquered another tower, the Scurlock Tower, and its valet parking. Patient transport helped wheelchair him up. After the appointment, the doctor backed him out of the exam room to the lobby because there’s a trick to managing the space, and then I wheeled him back down. I’m getting better with the wheelchairs – we even managed to access a family restroom with the chair this go-round. The nephrologist will follow up with Roy by video visit in two weeks, but most essentially changed his medications. He doubled the diuretic (torsemide) to get the ascites and edema under control. He’s asked that Roy restrict his fluid intake a bit and do some labs next week.

Roy had not been eating very much; because of the ascites, his body feels full. The nephrologist asked that he prioritize getting protein in his meals and Roy has been eating a little bit more since having the first paracentesis and the medication change. He’s still having his protein shakes and ate some eggs the last few days. There are other vegetarian options (lentils, beans, tofu, cheese, etc.) but everything needs to be fairly low salt. I am going to be looking at some ways to cook more eggs and slide some more protein onto his plate.

Yesterday, Thursday, we went down to Methodist Cypress for the next infusion. Roy still has the catheter so the lab cannot do the necessary urinalysis. And, maybe because of the medication changes, or maybe just the overall yuck of ascites and edema, Roy’s veins decided to hide and roll. So he got extra punctures and I had to hand the vials to the tech because she couldn’t move away from the needle to grab them. As a result, the infusion nurse got to pull the sample for the urinalysis upstairs and the infusion center has changed the orders so that the next two cycles of pre-infusion labs will be done through his port upstairs in the center. This will add some time to the appointment but should be easier on his body. He doesn’t like the port poke in his chest (who would?) but at least his arms will be less damaged.

Roy got a room overlooking the trees and 290 this time, but I am not sure it much mattered to him – he’s exhausted and uncomfortable and slightly jaundiced. His platelets were borderline for having the treatments (49), but oncology cleared him to go ahead with a suggestion for follow-up before the next scheduled infusion. I finished another coloring page. Afterward, we took a brief field trip to Jersey Village for a stop-by visit with my parents. They wanted to see us, but Roy can’t navigate into their house (steps) and was properly wiped out by the infusion process, so this was a quick car-side chat in the driveway before we returned up highway 6. While we were there, transplant cardiology called trying to set up a screening appointment – it’s been on the list but not a priority this summer. We will have to find a time to do that when he is feeling stronger and less puffy – there’s probably a best time in the infusion cycle if we can find it.

Although he had the paracentesis last Friday and it helped him feel a little bit better, by Tuesday, Roy was ready to schedule the next one as the fluid came back quite quickly. The only paracentesis slot available was at 7:30 am today but at least it was here in town. It was the correct time for his body as he began to leak a bit from last week’s injection site. At this point I think he kinda wishes we could just wring him out like a sponge. This time, they were only able to get 3.9 liters out. That’s not as much as Roy hoped, but it is below the limit that the nephrologist asked us to stop – 5.5 liters – to avoid kidney injury. The IR doctor said if there was more fluid than that when they do a paracentesis, Roy would be more likely to leak. Just in case, the nurse sent us home with supplies. He’s now scheduled to have another paracentesis next Friday and then the Thursday after that (Roy is already booked by Methodist hepatology on Friday that week). So looks like our Fridays are going to be with the IR department going forward.

Roy’s home health nurse also visited today. She applied the lotion that he needs for his skin and checked vitals, medications, etc. She let me know to stagger the emptying of the catheter bag to avoid triggering spasms in his bladder. Because he’s feeling so rotten and it is harder for him to move around, he’s needing more help from me with bathing, hygiene, and dressing. At his request, he has some new soft pillows to aid in achieving a more comfortable sleeping position, although I’m not sure he ever feels really comfortable. I’m also sleeping in the guest room when we have early morning tasks or travel; he said he was bothering me and keeping me from sleeping (but I think maybe I was bothering him). This sleeping arrangement confuses Henry because he thought the guest room was just for him and I am realizing I need to adjust a few things for any future guests.

The old barstools went away and the new ones arrived on Wednesday while we were gone – they had all the required holes drilled in them, and have been fully assembled and are doing their jobs next to the kitchen island. I have acquired glassware that is appropriate for guests, too. When he’s feeling peppier, Roy is interested in having short visits or someone to come watch a game on TV with him.

Incrementally this has become more challenging, more complex, and just more. A teetering tower of turtles or a traveler carrying goods in a Dr. Seuss tale with multiple hats stacked and an egg-beater dangling from a fishing pole would be a good illustration for what is happening now. I am now bracing myself at every medical interaction to be handed another turtle or teacup to add to the precariously balanced structure – can I hang it off this umbrella handle or tuck it into that pocket with the three hamsters that are attempting to escape? Probably not. I am reaching my limit of what I can handle for Roy and I am going to have to get some help. I am not sure which things can be handed off and which things I will need to keep (and really that has to be decided with him), but please be aware that you, my friend, might be handed a turtle or be asked to right a teacup tottering on an edge as we seek to balance this very complex situation. I told someone I would let you know when. We’re reaching when.