Making Plans

For those of you who missed my previous post, Here We Go Again, suffice it to say that my recent progression has caused all kinds of consternation and doctor’s appointments and late nights and research and angst around here since we learned that my current line of treatment has failed me. It’s hard to describe sometimes how experiencing progression of the cancer in my body just throws everything into chaos and how each time the cancer outsmarts the best we have to throw at it, it feels like one step closer to death. Being reminded of the severity of this disease, how nothing is guaranteed, how sneaky cancer can be, and the reality of a Stage IV Metastatic Breast Cancer (MBC) diagnosis is no fun; seriously, no fun. 0 stars, do not recommend.

BUT, after about a million discussions and five million appointments (or so it feels like), we have reached a decision and we’ve decided that I’ll apply to participate in a clinical trial at the Mayo Clinic in Jacksonville — it’s not a done deal yet, I’ll be spending a full day of testing to ensure that I meet all the criteria this week, but it appears that so long as my bloodwork and scans and all the other factors line up that I’ll be approved. For anyone who is interested, here is the description of the trial available online: https://classic.clinicaltrials.gov/ct2/show/NCT03328026

Why a clinical trial?

There are so many factors that go into deciding what medication to take during this cancer experience and I’ve participated in multiple clinical trials looking at a variety of factors in the cancer experience, but not any trials looking at experimental medication as of yet. Yes, there are risks. There are always risks. At the same time, sometimes there are those times when it’s the right decision to be bold and swing for the fences.

That’s what we’ve decided to do, to participate in this trial involving a vaccine that could potentially result in a durable response and perhaps the opportunity to take minimal maintenance medication following the trial. When looking at what is available right now as standard of care (or even a little outside of the box), everything on the list of options available to me right now are all IV chemos. Yes, some oral medication is coming and may be approved before the end of the year that I might qualify for, but the reality I’m facing now is a very different quality of life going forward and being tied to the infusion center for the remainder of my life.

Does that sound overly dramatic?

It probably does. So much of what happens in this MBC experience feels like choosing between life and death. I see so many people around me struggling, their cancer progressing unchecked, entering hospice, and dying — this front row seat to what is coming for me at some point can be shocking, overwhelming and oh so triggering. Each time we have to examine the different options, checking in with all of the experts and 2nd opinions, the decisions feel so weighty and heavy and sometimes impossible.

We wade through these decisions and all the details over and over. It’s never one and done, we make these decisions over and over and over. It’s always complicated, most times increasingly so, and terrifying. There are a million details to consider, all kinds of test results and things specific to my body and my experiences and what has come before. We are each such individuals and the experiences of others can give us a glimpse into what a medication might do, but there are never ever guarantees.

Adjusting to the fact that nothing in this MBC experience is controllable or truly reliable is horrific.

Yes, I admit it, I have tried to control so many things in my life and in this experience. Some of that effort is fueled because of how much I feel out of control, how much I have lost, how much has changed, how much is dehumanizing, how broken our health care system is, how terrified I am ALL THE TIME. To find those small areas where I can impose my will on the experience helps, a little.

This trial will be my sixth (6) (or maybe eighth (8), depending on how you count lines of treatment) line of treatment. That means we’ve had to go through this mind-numbing, complicated process of figuring out what’s next at least six (6) times. I’m not (and probably never will be) that patient who just does what any doctor suggests; I’m all too aware that there are many different opinions and no certainties. When I am making these treatment decisions, I take all the information, meet with as many experts as possible, and then synthesize the recommendations into something that works for me and my family, struggling to fit cancer and cancer treatment into my life, not the other way around. And it is a STRUGGLE because cancer and cancer treatments can truly take over at times.

I would be remiss if I did not mention that going through this process of figuring out what’s next, struggling with all of the deaths around me, and feeling the inevitable march towards death for myself, is excruciatingly hard during this pink soaked month. All month long, I really do try to see the good intentions behind various celebrations; at the same time, it feels like there are millions of people dancing on the graves of those we’ve lost and will dance on my grave too, without a care in the world. Maybe that seems simplistic or an over-simplification of events that are meant to be empowering, but that’s where I’m at and if I over-react or get a little intense this month, its coming from fear and grief and all the overwhelming emotions swirling around in my body.

Be kind this month (and every month) to those of us with MBC. We’re not ok. Many of us are angsty and triggered and struggling with feeling like we’re left out and invisible to the pink machine.