This, Too, Is Part of the Fight

The Emotional Toll

Photo by Callum Skelton on Unsplash

After reviewing my full-body PET scan, the team at Johns Hopkins told us what we didn’t want to hear: my cancer hasn’t responded enough to justify a stem cell transplant, not yet. The treatment I’ve gone through so far hasn’t moved the needle far enough for them to proceed.

We were devastated.

There hadn’t been a dramatic shift in the numbers from our earlier conversations, but we had hoped. Even cautious hope carries weight. It builds expectations, possibilities, a sense of nearing the next step. So when that hope met the wall of “not yet,” it knocked the breath out of me.

I’ve learned that with cancer, disappointment isn’t always loud. Sometimes it’s quiet, heavy. It settles in your chest like a stone. There was no dramatic scene. Just a long silence after the call, Maria’s hand on mine, and that familiar mix of heartbreak and resolve. We cried, then we breathed, then we started looking for another way.

So we regrouped, my Oncologist, Maria, and I put together a new plan, after getting second opinions from other cancer centers.

I’ll start a new regimen: Pembro combined with GVD, for the next few cycles. We’ll watch and see what my body does. If there’s improvement, we can revisit the stem cell option. But if we do, I’m not sure I’ll return to Baltimore. I may choose a different path. A different team. Because this fight is personal, and I’ve learned to trust my instincts, not just the protocols.

In the meantime, I’ve had a short break from chemo to let my body recover. I’ve dropped down to around 170 pounds. I’m trying to eat more, sleep more, regain strength. My body feels thinner, quieter, like it’s waiting on something. Yoga helps some days. Other days it just reminds me how far I’ve drifted from myself.

But it’s not just the physical toll. Emotionally, this journey has been brutal. I don’t talk about that part as much, maybe because it’s harder to name. There’s a deep mental fatigue that comes with being hopeful and vigilant at the same time. It’s like holding your breath while still trying to speak.

Some days, the sadness hits without warning. It creeps in while brushing my teeth, while staring at the ceiling in the quiet before dawn, while hearing a song I didn’t know still held memories. It’s a grief not just for what’s been lost, but for what feels suspended, my strength, my steadiness, my sense of who I am in a body that no longer plays by the rules.

I grieve the version of me that used to feel solid, strong legs under me, a clear head, days measured in plans and not pills. I miss waking up without calculating what energy I can spend. I miss knowing what my body could do without question.

Then there are days when sadness gives way to anger. Real, raw frustration. The kind that bubbles up from someplace deeper than thought. It’s the ache of doing everything right, following protocols, showing up, enduring side effects, staying hopeful and still being told it’s not enough. It’s that feeling of screaming into a void that doesn’t answer back.

There are days when I want to break something, even if I know it won’t change a thing. I want someone to tell me why this is the path I’m on, why this detour, why this delay. I want to trade stoicism for shouting.

Then, there are days when the emotions just… turn off. As if they’ve fought too hard, too long, and decided to go quiet. Those days are the hardest to explain. It’s not peace. It’s numbness. Like walking through fog in a place you used to know well.

But even in that numbness, there’s a thread I hold onto. A thread woven from the people who love me, from the man I still am underneath all of this, from the stubborn belief that something better is waiting just ahead. Some days, that thread is all I’ve got.

Through all of this, I haven't lost my hope. I never let go of the belief that I can come back from this. What I want, more than anything, is to get back in the saddle, to feel solid in my body again, clear in my mind, grounded in my spirit. I want to reclaim the parts of me that this illness has quieted. I want my strength back, not just in muscle or endurance, but in presence. In joy. In freedom.

We’re not where we thought we’d be. But we’re not done.

I'm still moving, still fighting, still choosing life, even on the days when it feels far away.