Joy, Anxiety, Hope, Terror and everything in between

Thank you to everyone who checked on me this past week, which was my first week on a clinical trial (which you can read more about here). The last month or so has been a rollercoaster of emotions and full of activities and work outside the norm for me. While we never know what is going to happen with any new line of treatment, we’re hoping and planning for me to be on this trial for a long time, which necessitated and lot of juggling and moving things around. As most of you are probably aware, I do tend to keep myself pretty busy and there are many activities my children are involved with that cannot be moved, so there were and are a lot of moving parts.

So, updates …

I’ll first start with the positive. I made it into the clinical trial and it began for me last Monday. This first cycle involved three pretty long days, which will repeat every three weeks for the next twenty-four (24) months or so, as long as it works. The first day was an infusion of chemotherapy, the second day (48 hours later) was injections, and the third (24 hours after those first injections) was more injections. We’ve worked out a schedule wherein someone goes with me for the first day (my parents took this first one!) so we can drive up and back the same day (Mayo is about 2.5 hours away from where I live) and then for the injection appointments, I stay overnight since they are so close together. As I am part of an expanded “arm” or “cohort” in this trial, I will get the other part of the experimental combination at different points in the next two cycles. Retifanlimab is the name of the medication I didn’t get this first cycle and you can read more about that here and here. I kinda like the term “programmed death receptor” as the description.

When I think about hope in the context of living with a terminal cancer diagnosis, one of the first things that comes to mind for me are clinical trials. Clinical trials are the mechanism by which new medication is tested and then presented for approval by the FDA here in the US to then becomes standard of care for people like me. Without clinical trials, we wouldn’t have options that keep us alive hopefully long enough and well enough that we may see the possibility of a cure or perhaps Stage IV Metastatic Breast Cancer (MBC) becoming chronic. Just to be clear, there is no present cure for MBC and outside of a very very very small group of people for whom it is chronic, it’s not generally a chronic disease either and vast majority of us will be in treatment for the remainder of our lives, until the disease ends our lives prematurely. Participating in a clinical trial (this one is my 6th), means that I am an integral part of learning more about what works and what doesn’t work. While clinical trials are so important, the statistics on how many patients participate (especially in the earlier phases) are pretty dismal. Probably because of the challenges …

Now for the challenges ...

While I’ve participated in five (5) other clinical trials since 2017, this one is my first trial involving medication for the treatment of the cancer in my body and certainly has the most appointments. Getting into the trial was a heavy lift and involved a LOT of calling and following up and a SUPER long day of tests. Also, a LOT of waiting, something I don’t do well. Did I mention lots of calls and following up?! And WAITING?!?

Once we discovered that I was accepted, then I had to organize my local appointments (Faslodex loading doses and then monthly shots as well as Zometa, which we’re doing every 4 months now) to fit into the trial schedule, adjust volunteer commitments at my boys’ school, adjust other projects and volunteer activities, fit everything into Elliot’s schedule, fit everything into my parents and my nephew’s schedules, rework commitments made a long time ago and recently, etc. Thankfully, the trial coordinator has been working closely with me and the sponsor agreed to adjust the schedule to allow me to attend the San Antonio Breast Cancer Symposium in December. I’ve only adjusted everything through the end of the year, which is around the time that we will get scans to see if the trial is working. More work to come, then, so long as the trial is working.

Once I got all of the appointments worked out, then we had to look at expenses. While the trial sponsor is paying for the experimental medication and some expenses, my health insurance has to be involved with some things, plus traveling and staying overnight. The allowances and coverages in the trial are simply not anywhere close to the actual cost of participating in the trial, which is a significant barrier for patients participating, and while I’ve met the out of pocket maximum for 2023 with my health insurance, that will reset in January. While I certainly appreciate what is covered, we’re looking into different options for covering the outstanding expenses, which are significantly more than we’ve ever had to accommodate thus far.

Here’s the thing that I often think people serving patients often forget — we have to fit cancer care/treatment into our lives, not our lives into the cancer care/treatment. I’ve often complained about how schedulers behave and how it feels as though care/treatment is often imposed on me, that I’m not treated with respect or like a human being with a life and a schedule. It’s horrible and comes up over and over and over. No scheduler or individual provider has any idea what my schedule is, what responsibilities I have, how HARD I have to work to ensure that my kiddos don’t lose out because of my care, how much my husband has to carry so that I can be at appointments, how much help we have to organize, etc. The assumptions made by people who have no business making assumptions is everywhere and exacerbated by the complexity of my care.

Deep breaths.

I try very hard to not explode on hapless schedulers who cut corners by making assumptions and schedule appointments without talking to me. Every medical file in every location I’m treated has many many many notes explicitly directing schedulers (and everyone else) to call me before doing anything, but people violate this request all the time. As I’ve explained over and over and over, cancer and the care we need takes everything from us and having personal autonomy over my own schedule, over selecting appointment times/dates that work for me and my family, over which doctors I see, etc., are not things I am willing to give up. Trying to explain this over and over is exhausting. Yes, Elliot reminds me regularly that while against the “rules” at nearly every institution if I would accept that this behavior is the norm, I wouldn’t get so worked up and upset. I do fully understand that this may seem like a small thing to an outside observer, yet this is a/the line that I cannot accept others crossing.

I’ll put up with a lot (and have). I’ll deal with many side effects (and have). I’ll work with people who are unprofessional and disrespectful and oblivious to human decency (and have). I’ll manage the egos and protocols and processes (and have). I’ll drive hours and in the middle of the night to show up on time for appointments (and have). I’ll take risks and allow my body to be experimented on (and have). I’ll do what I have to do (and have) to stay alive.

All I ask is that I be shown the same respect that I show over and over and over to others, that I be treated with dignity and decency, that no assumptions are made about my schedule, and that I be treated as the person making the decisions, because I am.

In the midst of all of this chaos, I had the opportunity to spend a weekend at the beach with Lisel Phelan and Victoria Goldberg. We are the three remaining members of a healing circle started a few years ago. We’d met in person once before, two years ago this month. I wrote this post about the Healing Circle back in January of 2022 and our time together then. It was a welcome respite in the middle of the heaviness and struggle.

I am thankful for people who get MBC, who get me, who show up, who follow up, and who love me through this often frightening and complex experience. Victoria and Liesl are two such people and I can’t say enough about how engaging and connecting with others has helped me cope and often thrive.