Every Three Weeks

Roy is going to be getting infusions of two immunotherapy drugs every three weeks starting in June. We have the schedule in hand through September for his new “Liver Cancer Journey.” That’s how this is tagged in his My Chart. He now has multiple care journeys: this one, one titled “Transplant Journey” and one that is closing, called the “Esophagogastroduodenoscopy (EGD)” care journey. The schedule includes a morning trip to the lab for pre-infusion blood tests and then a bit later in the same day four hours to get the infusion of Atezolizumab and Bevacizumab, which the documents insist are pronounced “a te zoe LIZ ue mab” and ‘”be va SIZ you mab.” Not sure what we will call these yet – Liz and Siz, Drug A and Drug B, Tay and Bea, or something else – but their official names are too much to say (or type) repeatedly. If you have a suggestion for nicknames please let me know.

Roy had pre-procedure labs this week in preparation for scheduling the installation of the port. He also had a follow-up with our PCP and got a few more labs there, but everything came back in the normal range for those. We are sad that Dr. E is leaving her practice but are glad that she is going to be taking care of herself while she decides what is next. Maybe we will get lucky and she will decide to come back after a bit; in the meantime, she’s set us up to move into a colleague’s practice after July.

Roy and I talked a lot after seeing oncology last week about what would be best for us in this season. With the confirmation that the cancer was not retreating as hoped, and the impending shift to this immunotherapy (and whatever it brings in its wake), we decided it was time for me to step back off of campus and into this journey with him. I resigned from my job effective the end of May. I knew it was the correct step because I felt absolutely calm after deciding. Whether he responds to these treatments or not, he needs to be my priority at the moment. I did not want to look up from a series of days spent in the office and juggling his care and regret not being here for him now. Turns out, the schedule is more demanding than we thought and any other appointments will have to be worked in around the infusions and labs.

Roy will not be in the clinical study (the paperwork and set-up were taking too long in Dr. Abdelrahim’s opinion and Roy is a bit of a unicorn), but he will be treated using all the protocols of the study because the study belongs to Dr. Abdelrahim. The nurse said that she hoped Roy wouldn’t be disappointed to not be written up in the academic journals. We are not fussed about that as long as he can do the treatments. His unicorn status? Roy’s cancer doesn’t trigger the normal cancer markers in the blood tests, for example, and he’s an alpha-1 cirrhotic instead of the regular type (broadly defined), among other things (which would probably make him an outlier on the study anyway). Nonetheless, they think this treatment is the way to go.

Atezolizumab is a monoclonal antibody and helps the immune system slow or stop cancer cells. Among the things that a patient might experience are serious skin reactions (rash or peeling, discoloration) or swelling. A simplified list of possible side effects that the doctor would want to know about quickly are allergic reaction, dry cough or breathing issues, eye pain/vision issues, heart muscle inflammation, hormone gland problems, infusion reactions, kidney injury, liver injury, pain or neuropathy, rash, fever or swollen lymph nodes, skin issues including inside the mouth, and sudden digestive issues. The not-so-serious side effects may include bone, joint or muscle pain, fatigue, nausea, loss of appetite, diarrhea and rash.

Also a monoclonal antibody, Bevacizumab blocks a specific protein. People taking Bea most commonly feel unwell, may experience more bleeding or bruising, and may take longer to heal from surgery or wounds. Again, possible side effects include some that must be reported immediately (allergic reactions, bleeding, clotting, heart attack or failure, infection, higher blood pressure, reactions to the infusion, kidney damage, severe stomach pain, stroke, severe headache or encephalopathy) and some that are annoying but aren’t acute (back pain, digestive issues, dry skin, funny taste, more tears, or nosebleeds).

And in case you thought Roy might share either of these drugs with you, he won’t. So don’t even ask. The instructions for each drug clearly state, “Do not share this medicine with others.” I’m sure this is because somebody somewhere did share, but I continue to be puzzled by how that would even be possible or desirable. Exactly how would someone share?

Roy is scheduled for the Interventional Radiology procedure to get his port next Friday. I will do as much as I can to prep materials for hand-off to others in my department over this holiday weekend, but we go Tuesday for his PET scan (for the transplant clearance process). So I will only be in my office again for two days this week – it feels very odd, and very abrupt, and I keep reassuring those who will take on these tasks that I am still available to them to decipher my scribbles, answer a question, or brainstorm as they start to make what was mine into their own. I will miss my people and contributing to the wellbeing of students the way I have, but I am sure this is the correct thing for us right now.

It’s starting to sink in for Roy what he’s about to do with this immunotherapy and he has trepidation but is committed. In some ways, he has been very fortunate. They found the cancer because of a different set of tests in January. Dr. McFadden acted quickly to get him evaluated and onto the liver tumor team and then the transplant evaluation. They initially treated the HCC based on those January tests. The need for the immunotherapy only came to light because transplant evaluation required another MRI; his post Y-90 imaging would not be happening until about now, so that imaging has gotten him into treatment sooner than might have happened. We are blessed that we have had some great doctors care for us here in Bryan because their observations moved Roy’s situation along to Methodist’s team. And yes, I know, he still has cancer. However, I am purposefully looking for glimmers of good in this scary, fixing-to-be-even-more-consuming situation.

This coming week: PET Scan and port installation. The next week: follow-ups with oncology, annual eye exams, and then labs and first infusion of Atezolizumab and Bevacizumab. We’re picking up speed, and shedding some responsibilities, to maximize the journey ahead. My team has had to remind me which days I am out because it is jumbling together at the moment.

Oh, and as far as mythical creatures go, Roy has a greater affinity toward the chupacabra than the unicorn. His chupacabras in his fantasy league are doing quite well! But he’s disappointed about how Crystal Palace fared in their playoffs.