Medical Update:
Yesterday was a pretty uneventful chemo day, which, honestly, is the best kind. No surprises, no complications, just the usual process of getting pumped full of meds that completely wiped me out. Today, I received my first of three injections of Nivestym.
So what is Nivestym? Basically, it’s a shot that helps boost my white blood cell (WBC) count. Chemo and the immunotherapy tanks those numbers, making it way too easy to catch infections, so this stuff tells my bone marrow to kick into gear and start producing more WBCs, specifically neutrophils, which are the frontline soldiers of the immune system. Without them, even a simple cold could turn into a bigger problem.
This is just another tool to keep my body from falling behind while the chemo and immunotherapy does its thing. Of course, it comes with some side effects, bone pain and flu-like symptoms, but at this point, what’s one more thing, right? I’ve got two more injections coming up, one Friday and another on Saturday. Just another step in the process, another box to check. Right now, it’s all about putting one foot in front of the other and getting through each day as it comes.
Control
Cancer takes a lot. It drains your energy, steals your time, and forces you to adapt in ways you never thought you’d have to. But for me, one of the hardest things to lose has been control.
I’ve always been independent. I like being the one who makes decisions, takes care of things, and keeps life moving forward. I’ve built a life around being reliable, for my family, my work, and myself. But with treatment, that sense of control has started to slip away.
Take driving, for example. It seems like such a simple thing, something I’ve done without a second thought for years. But now I can’t always drive myself where I need to go. Between the side effects of treatment and the exhaustion that seems to settle into my bones, I have to rely on others to get me to appointments. Maria, friends, family. They never complain. They are always there, ready to help. But that doesn’t change how it feels. I’m used to being the one who handles things, and now I’m the one who has to rely on others.
Work has been another adjustment. My colleagues, with the best intentions, have taken things off my plate. They assume that less is more for me right now, that I need to focus on my health rather than my workload. I know they mean well, and in many ways, they are right. But it’s a strange feeling to be on the receiving end of that. I’m used to being the one people turn to, the one who takes things on, not the one who needs things taken away. It’s a reminder that, for now, I’m not operating at full capacity. And that’s hard to accept.
Then there’s something as basic as going outside for a walk. That’s always been an easy way for me to clear my head, to feel a sense of freedom. But my low blood counts have made even that a challenge. Some days, stepping outside feels like a risk. I find myself watching others move freely, going about their day, while I have to pause and consider if it’s even safe for me to do the same. It’s frustrating. It makes me feel trapped in my own body, in my own life.
Losing control isn’t just about the inconvenience of needing help or adjusting to new limitations. It’s about identity. Who am I if I can’t do the things I used to? If I have to depend on others instead of being the one people depend on? If my choices are dictated by test results, infusion schedules, and how my body feels on any given day?
I don’t have all the answers yet. I’m still wrestling with what it means to surrender control. Some days, I fight against it. I get frustrated, I push back, I wish things were different. Other days, I try to reframe it. Maybe this isn’t about losing control, but about learning to trust. Trusting the people around me to help when I need it. Trusting my body to recover, even if it’s on a timeline I can’t dictate. Trusting that even though this season is hard, it won’t last forever.
Control: Hair Today, Gone Tomorrow?
Ironically, I still have my hair. I know that’s not how this is supposed to go. Everyone talks about the inevitable moment when clumps start falling out, but so far, I haven’t really noticed much in that department. It’s thinning, sure, but nothing too dramatic.
I caught a glimpse of myself in the mirror and, well, I looked like a ragamuffin. A little wild, a little unkempt, like I had rolled out of bed and just decided to go with it. Normally, I’d get it trimmed up, cleaned up a bit, but then this thought hit me, what’s the point? If it’s going to fall out any day now, why bother?
Do I clean it up and hold on to some dignity for as long as possible, or do I just let it ride until nature (or chemo) makes the decision for me? It feels like such a small thing in the grand scheme of what I’m dealing with. A true first-world problem. But it’s also just another reminder of how little control I have right now. I don’t get to decide what my body does. I don’t get to predict if I’ll wake up tomorrow with the same amount of hair, or if this is just the calm before the storm. I’m stuck in this weird limbo where I’m still me, but parts of that identity, like something as simple as my hair, are hanging in the balance.
I don’t know what I’ll do yet. Maybe I’ll get it trimmed just to feel a little more like myself. Maybe I’ll leave it and see what happens. Or maybe I’ll wake up tomorrow, run my hand through my hair, and suddenly have my answer. Either way, I guess I’ll figure it out as I go,just like everything else right now.
Right now, I may not be in control. But I’m still here. And maybe, just maybe, that’s enough for today.
Hey Chris, why go through the hair anxiety? Go get your head shaved, that puts you in control. I hope everyone reading this blog of yours appreciates your candor. It's going to help so many. You know, when you're on the other side of this, you'll probably make a lot of changes in your daily life. Something like this shifts your priority list every which way. I love you and pray for you.
I know you can beat this....God Bless!! Carole Lynne
My dear Nephew JANGUS--
Better people than me have often stated control is a mirage -- no one really has it when it counts. Please let you ego be strong enough to accept help -- it is NOT a weakness to let those who care for you help. If you want to take control of something, start at the top -- shave your head now, don't wait. I guarantee you'll feel better
-- ODIN