When I was diagnosed with metastatic breast cancer (MBC) in 2017, I did think I knew what fatigue was; after all, I'd been to graduate school and I had two children, so there had been quite a few sleepless nights followed by busy days fueled by coffee and sheer will. Oh boy, did I not have any idea what I was in for! I recently sat down and came up with my top five (5) reasons that cancer fatigue is just ... different.
First, chemo. Back in 2017, when I was initially diagnosed, we thought I was stage II. I'd had a lumpectomy, didn't tell them about the fact that I was limping, and I was node-negative. So, when the Oncotype score came back at 27, my then medical oncologist suggested chemo. We found out in the middle of chemo that I'd been stage IV from the start, but I still finished the "Red Devil". I vividly remember the first Monday after the first infusion when I got up to go to work. I made it to the car and the one-mile drive to my office and just couldn't make it further.
I felt as though my body had betrayed me.
Second, targeted therapy. Every single medication I've taken since we found out I was stage IV has fatigue as a side effect. Since I'd been able to work my way back to some amount of productivity after I got through chemo, I thought I'd be able to power through. Nope. There's just something about taking medication every single day that causes fatigue that just builds. It builds and builds and builds.
I felt as though my body was continuing to betray me.
Emotional burden of MBC
Third, emotional weight. Before MBC, I'd been through some hard stuff. Law school is designed literally dismantle the way you think and rebuild your thought processes in a different way. That's pretty exhausting. I've moved a lot in my life. I've been through a divorce. Those two kiddos I mentioned above, I was pregnant and birthed them and then dealt with nursing and pumping every 2-3 hours for four years straight. That was a lot to carry.
The emotional weight of MBC is heavy like nothing I've ever dealt with. It is a constant black cloud, a "dark passenger" as Dexter used to say, the sword of Damocles hanging overhead ... I'm sure there are other metaphors I could trot out, but the bottom line is that it is a negative "thing" that never leaves. Sure, I might be able to put it in a box and put it away so that I can focus on something for a bit, but it always comes back.
That emotional weight causes physical fatigue.
Fourth, the what-ifs. I'm fairly good at dealing with some amount of chaos. I'm not sure anyone could be a litigator without being able to pivot and think quickly on their feet and I've had some practice since I'll be coming up on twenty (20) years soon enough since I graduated from law school. And yet, the what-ifs in this experience are much heavier. The what-ifs are about progression and symptoms of perhaps brain mets or other serious ramifications of MBC and the treatment. The what-ifs have to do with death and I have planned enough and what will my family do without me.
The what-ifs are paralyzing at times.
Fifth, compassion fatigue. I was talking to some friends who I've known for years before MBC about something. I don't even remember what it was, but it was a subject that is often raised in the MBC support groups and discussed. After a few minutes of talking, I realized that all of my friends were staring at me with mouths gaping open.
I realized that we have normalized suffering in the MBC community.
I don't say that as a negative. What we deal with on a daily basis, day in and day out is rough. It is weighty. It is our life and what we have to do to get through it. But what we deal with so regularly isn't normal. It isn't the experience of those who aren't living with a disease that will kill us. And it was GOOD to be reminded that what we are carrying is hard.
Those are my top five reasons that cancer causes a different kind of fatigue - what are yours?
Have you gained new friends in your metastatic cancer journey?