Reporting from the trenches …

As much as I hate the war metaphors as applied to cancer, I also very much feel as though I’m jumping from battle to battle as I prep for the next line of treatment. Perhaps that is unkind to healthcare workers who are probably doing their best (a mantra I repeat to myself over and over) and I do realize that I do sometimes make mountains out of molehills as I plan for all the worst things to happen. At the same time, there are so many moving parts to our lives right now with two active young children and it’s kinda complicated to all of a sudden shift everything around. It is also hard to explain the amount of urgency I feel to get on a new medication RIGHT NOW after the amount of progression I’m facing and I’ve had a lot of weird side effects over the years. So I obsess.

I have a few things I’ve learned (and relearned) over the last week or so that I wanted to pop in and share.

First, on prior authorizations (PA). This archaic and utterly stupid and disrespectful practice needs to be flushed immediately. I hate it and clearly have strong feelings about it. And yet, while we all like to hate on insurance companies, I find it incumbent upon myself to share how utterly amazing my insurance company was this time around. My oncologist entered the order for Enhertu on a Thursday after the bad PET on the Wednesday and the PA team got the info at 9:48 am on Friday. On Monday morning in the middle of volunteering at my kids’ school, I called my insurance company to find out if they’d reviewed everything knowing that they have one business day to respond to a PA and discovered they’d received nothing to respond to. Pretty proud of myself that I did not immediately melt down but I was feeling pretty panicked. The care coordinator at the insurance company then got on the phone with the PA team at my doctor’s office, everything was submitted by 1:41 pm and Enhertu was approved by the end of the day. Each person listened and responded; one went above and beyond.

Second, on scheduling people. I’ve not always had good experiences with schedulers. I have a pretty complicated life and it’s really hard for me to handle those people who unilaterally make and change appointments without talking to me. This time around, in the midst of the PA stuff, I’d called the scheduling team and tried to get my appointments on the calendar but was told that I couldn’t schedule anything until the meds were approved. The scheduler asked a few questions about my schedule and made some notes. She came in early on Tuesday, noticed that Enhertu had been approved late on Monday and immediately called me. Her first words were, “I don’t mean to interrupt school drop off and are you able to talk since you are with your kids.” Even though we couldn’t get everything scheduled exactly the way I need it to happen, she paid attention and made sure I can start Enhertu on Friday and we have drop off and pick up covered.

Third, on teams working together. The longer I live with stage IV Metastatic Breast Cancer (MBC) and the more lines of treatment I’ve been on, the weirder things have gotten. Or maybe it’s just more side effucks. Whatever the reason, it’s just gotten more and more complicated to deal with not just the meds and the side effects but also the meds to deal with side effects. At any given time, over the last few days, I’ve had multiple message threads going with nurses and pharmacists and other members of my team as we work through all the different things. And sometimes the end result is my doc saying, let’s just see how the first treatment goes; and maybe it’s a bit overkill; and maybe I’m obsessing (actually I know I am) but my team has walked me through all the things and I know what to do if the things I’m concerned about happen.

Fourth, on people showing up. Compassion fatigue is a real thing and after nearly 7 years of treatment after treatment, I know it’s hard to continue to show up. I get it. I have to live it and I often don’t want to show up to all the things. And yet my community keeps showing up. The packages keep coming, the cards, the meals, the transportation, help with the kiddos, and calls and messages and just being there. No, no one can fix what is happening or change the fact that I’m having to start yet another treatment, but that’s not what anyone in this situation needs. And so many of you get that. I’m just grateful.

Fifth and finally, I have some feelings about clinical trials. This last one was my 6th clinical trial (albeit the first for a treatment medication) as well as being my 6th line of treatment. I’ve complained about a variety of things that happened or didn’t happen, privately and publicly. I have a new appreciation of how hard it really is to participate and a really different perspective on how important patient involvement in the design of clinical trials can be. Suffice it to say that I’ll be thoughtfully deciding how best to put this experience to use, once I get this new line started.

So that’s it, just a bit of reflection as I work really hard to get everything organized to start Enhertu on Friday. More to come …