Bum Briefing #5 – By Beth

So all of these Bum Briefings have been written primarily by Eric, but this time we are going to switch it up, and I’ll write this update from my point of view. Unfortunately, I’m not as funny as Eric… so just bare with me!

One blessing in all of this has been that COVID restrictions lifted right when Eric was done with all the diagnostic tests. UW Hospital and Clinics started to  allow patients one support person, when previously, only patients who needed a decision maker were allowed to have a support person. This meant that I have been able to go to all of his chemo appointments. Honestly, I’m not sure how people went through this without a support person. There is so much information that is given at each appointment, I can’t imagine going through it alone.

Now that we are on the other side of the initial shock of everything, we have tried to get into as much of a routine as possible. We’ve settled in to knowing who our “point” people are in terms of his medical team, who to ask what questions to, and gotten used to knowing that we will have to repeat ourselves a number of times whenever he has an appointment.

Things have been relatively uneventful lately (which is good). So, for this update, we wanted to talk about what a “round of chemo” for Eric looks like?

Chemo days are every other Monday. Monday is when Eric’s oncologist is in the clinic, and so he likes to have all his patients in on Mondays. We don’t have a set time to start, and so it varies each time. So far, we’ve started as early as 7am, and as late as 12:30pm. I’ve compared these days to going to an airport and being there for about 6 hours, without the fun or excitement of actually going anywhere.

Prep starts the day before. I like to plan out all the “provisions” that are needed for the day. This includes Eric’s numbing cream for when they access his port, his fanny pack to hold his chemo pump, an ice pack in case he starts feeling faint, and of course—snacks. One thing we’ve learned is that Eric can not get hungry… while he may have been like that before… chemo takes the issue to another level. It’s almost like prepping for a big night of drinking back in college… you have to have a good base. We also bring all the tech we need so we can stay connected at work.

Eric has three appointments on chemo days. Lab is first, and is the quickest. The nurses in the lab access his port, and then they take his blood. Eric has a Power Port, which gives the nurses the ability to both take blood from the area in his chest, and give medication. The nurses in the lab are great… and already know that Eric gets the recliner in the back. After that, we head downstairs to the Carbone Cancer Center waiting room to check in.

Eric usually gets an alert with MyChart when the labs are back, and now we know at least one of the main things to look for… nuetraphils. After about 30 or so minutes after we get that alert, we meet with either the Physician’s assistant or his main oncologist, Dusty. This is typically about an hour after the lab appointment. We talk about any new symptoms, or any progression of symptoms that we are monitoring for, like sensitivity to cold and neuropathy pain. Then, if Eric’s labs are ok, they will order his chemo treatment, which is mixed the day of. But, we learned on his second chemo day, that if he doesn’t pass his labs, he gets sent home to monitor for fevers, and his chemo schedule gets bumped another week or more.

Then, we go back upstairs to the “chemo room.” The good thing about getting the “scarlet letter of C-Diff” is that he gets a private room with his own bathroom. This is a privilege only assured for those whose staff need to gown up in yellow robes. Apparently, this classification gets reevaluated after about 3 months…. so we’re hopeful to get a private room through this whole experience. His treatment doesn’t start right away, because it takes a while to get the drugs ordered and mixed. So, we end up waiting for about 30-45 minutes before his treatment actually starts. Once the chemo arrives, his drugs take 90 minutes to run, and then the chemo nurse hooks him up to his pump.

While in the chemo room, a number of people “pop” in. We always see the pharmacist at least once, and also his nurse navigator. The pharmacist helps troubleshoot, and find medications to help with the side effects of all of his other medications. It seems like with every new pill he gets, the next time we need to get another pill to address the side effects that pill causes. His nurse navigator’s name is Anica and she’s really great. She helps coordinate and prepare for appointments, and is just a good go-to for any random question. It seems like everyone knows a lot about the rules with insurance, and knows how to work within the rules to get what they want.. Like Dalai Lama says, “know the rules so you can break them properly.” It seems like all the UW staff are pros at this so far.

After the chemo nurse connects his pump, we are free to go. The pump is provided by a home health agency, and they also provide all the equipment to disconnect his pump at home before we leave. I also tend to bum a few other things from the nurse that the home health agency doesn’t provide, like adhesive remover, which is great because of all the adhesive (special clear band-aids called tegaderm patches) that’s used to keep his pump and port tubing in place.

At some point on Wednesday (46 hours after he is connected), Eric can be disconnected from his pump, and the port access can be removed. A nurse taught me how to disconnect during his first round of chemo. Then, they gave me a link to a video that was super helpful. The home health agency is also available if I have any questions or issues with the disconnect. It’s a simple process, but with many steps. The main thing is to make sure that all the tubing connections are clean to prevent a central line infection. His pump is disposed of in a yellow chemo container, and when that’s full the home health agency collects it and gives us a new one.

Thursday, Friday, and Saturday of that week, I give Eric injections of a drug called Zarxio, which is meant to rev up his bone marrow to make more nuetraphils. We are hoping this injection prevents him from becoming nuetrapenic again, needing to go to the hospital. We have done two rounds now with this injection, and his numbers have been great each time. Throughout the week, Eric also has to take his temperature. Because he’s immunocompromised, it’s important to monitor for any temperature, even a low grade one, because could mean that there is an infection of some sort. Usually, the weekend after his chemo are his low days… where he’s really wiped out and reliant on Netflix and the couch. But, the next week is pretty normal, and he gets his energy back right in time to start all over again!