First Cycle Underway

This week started the first cycle of Roy’s immunotherapy. On Tuesday, we met with his Oncology Nurse Practitioner Odasy at the Medical Center Outpatient Center to begin all of this. She reviewed his medications, the treatment he will receive, and the basic schedule. She let us know that Roy has two new prescriptions for anti-nausea drugs and that the check-up visits between treatments can be done as video appointments. The impact of the immunotherapy will be measured with the MRI and CT scans after every three cycles and those scans will include follow up visits with Dr. Abdelrahim.

Tuesday also included Roy’s follow-up with Dr. Dammad in Pulmonary for the transplant evaluation. The good news is that Dr. Dammad saw nothing on the PET Scan that would prevent Roy from being listed when the time comes. The “now what?” news is that the PET scan picked up a thyroid nodule and Roy has to ask his PCP to decide whether or not to do more imaging or a biopsy on that. Generally, this kind of bump on the thyroid is benign but it can impact other things just by being there, so we have added this to the list of items to check.

Wednesday was eye exams day – Roy’s previously-seen baby cataracts are no longer visible, his near eyesight remains excellent, and the dilation doesn’t phase him. I, on the other hand, still have my baby cataracts and am useless after dilation. Go figure!

Most of this week, Roy has felt more fatigue which he attributes to the port installation’s special antibiotic cocktail and perhaps a little extra sedation during that procedure. Today was a “struggle-bus” day as we used to say in my office as he felt particularly worn down, but we had to go to Houston for his pre-infusion labs and first immunotherapy. Methodist has a great valet system and they brought a wheelchair for him to use for the day – it was a little awkward as I was pushing it while lugging the day’s supplies, but we managed (he held the Sonic tea cups, thankfully). Never underestimate the capacity of the Bad Ass Quilter tote bag!

The first surprise of the day was that they wanted to run 12 different lab tests so the techs had to take four different vials of blood and required a urine sample. The compounding fun came when we were told they could not take the blood from the port; health professionals have to be specially licensed to use the port and these very lovely folks were not. So, in spite of the port, Roy got to have a double tourniquet on his arm and a puncture. The team in the lab did a great job nonetheless. They assured Roy that next time, they will only be doing five tests and only need three vials. I’m not sure that made him feel all that much better about the whole thing, but they tried.

We went a bit early because we didn’t know how long the labs would take, so we had about an hour in a waiting room to watch a scary home improvement show called something like “Help Me, I wrecked my house” where it appeared that very wealthy, but inept people had indeed smashed up the inside of their very expensive ocean-front home in an attempt to DIY and needed someone to fix it afterward. They had no plan – none.

The Infusion Center is quite nice – Roy got his own little treatment room with a big window and a big television (but he didn’t watch it). Nurse Madysen checked on the port site and got it all ready to go and then called down to the pharmacy to have his medications prepared. They use a two-nurse verification system before beginning so Nurse Stephanie did that. The actual infusion only took about thirty minutes once the medication was supplied. The second surprise came when Madysen let Roy know that the second medication would be injected into his thigh instead of being dripped. She was able to accomplish that while he was discussing his nutrition with Dietician Emily. So while the port is helpful, it has not eliminated the number of sticks as much as we hoped.

While he was getting his infusion Roy also had a visit from Oncology Nurse Navigator Michelle who brought us his official “Finding My Way: My Cancer Journey” binder. This publication is a lot like a basic orientation manual for the Neal Cancer Center and has lots of useful contact numbers and information about the various types of support they offer. We tucked the “Nutrition During Treatment” packet into the binder and have some more reading to do. Essentially, Emily let us know that Roy needs extra protein, all raw veggies and fruit need to be vinegar washed (we do this already), and he needs to eat regularly on a schedule. As previously mentioned, in part to fight the fatigue, he needs to be doing more walking so I have to work out a plan for that – somewhere out of the heat – maybe the mall, if it is still there?

We managed to dodge most of the rain – going down we hit some pockets that reduced visibility a lot and coming back we got a few of those notoriously scattered showers. The wildflowers are shifting towards predominantly yellow types with some red galiardias along the roadways and there are patches of purple starting to pop up.

The third surprise of the day was that our Walgreen’s pharmacy is not operational at Villa Maria and Texas until at least Monday due to “unexpected circumstances.” Luckily, the shop at Briarcrest and 29th was able to issue his anti-nausea medications. We’re hoping he won’t need them but I want to be prepared.

Roy is definitely, as he says, logey after our drive back and has already retired for some more sleep – so the added fatigue from these medications looks like a reality. We have a lot of things to watch for as his body begins to process this, but he’s got this underway. I cannot say that I am not a little bit scared (that PET scan also showed the main tumor is bigger), but I am glad this immunotherapy is available for him and that it currently seems do-able. Now, we wait to see what his cells think and hope they respond positively to this intervention.