Logistics & TMI
In support of
The Castillo Family
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The Castillo Family
This Wednesday marks six weeks since my surgery. Yesterday, I woke up from a nap and—for just a split second—I forgot it even happened. My body, for that brief moment, felt whole again. It was such a strange and emotional feeling. Each day, I’ve felt a little stronger, a little more like myself. Physical healing is happening. From the outside, you can’t tell that I’m sick.
I’ve had a lot of people ask how I’m doing and what’s coming next. If you’re looking for the real story—the unfiltered, medical, even slightly TMI version—this is for you. I share it not just to answer questions or explain why I may look different, but because I believe in the power of telling the whole truth. So much of what happens in a cancer journey lives in the shadows. People hear “chemo” or “surgery” and think they get it—but there are layers upon layers that most never see until they have to live it.
Where I Am Now
My wounds are finally healing well enough that I was able to start physical therapy last week—something I’ve really been looking forward to. PT is essential to help prevent lymphedema, regain movement, and rebuild strength. I have some “cording,” which is caused after lymph node removal. It affects my range of motion and causes pain when I use my arms. I also have pain from severed nerves on the back of my right arm and in my left upper chest area. Both are things I’m learning to manage and PT will help me do that.
My last post-op appointment with my surgeon is coming up on June 27. That appointment is the final “clearance” I need before chemo begins. Basically saying that my physical body has healed enough to be immunocompromised. After that, I won’t see my surgical team for several months, which feels like closing a chapter I wasn’t quite ready to finish—but I know it means we’re moving forward.
Let’s Talk Foobs
(That’s fake boobs, for those not in the cancer world. Yes, it’s a thing. Yes, it’s weird to talk about. Yes, I’m doing it anyway. You were warned there would be TMI 😉)
Right now, I have tissue expanders sewn into the muscle around where my breasts used to be. They’re firm and foreign and feel like waterbeds under my skin. They’re not comfortable—not even close. But they serve a purpose:
• They make future reconstruction possible
• They prevent my skin from sticking to muscle and bone
• They protect my organs during radiation
Each week, they’ve been filled a bit more, to stretch my skin slowly and gently. It’s a strange kind of pain—not sharp, but an ever-present weight. I wear a compression bra 24/7, and I have to sleep upright, on my back, every night. For someone who lived for curling up on her side—that’s been a surprisingly hard adjustment. But even in all that, I remind myself daily: I’m here. I’m healing. And this is temporary.
I can’t begin reconstructive surgery for at least a year, because radiation will come first and could affect the outcome. That long timeline feels so heavy. But it’s also a gift of time—time to get stronger, to accept, and to prepare for the next phase.
Sharing all of this—talking about waterbed boobs and nerve pain and sleeping like a mummy—is my attempt at being brave. It’s me learning to live in this new body and this new life, with as much honesty and courage as I can muster. Some days I feel strong. Some days I don’t. But I keep showing up. Foobs and all.
What’s Next
Chemo starts July 8 in Milwaukee. After lots of jumping through hoops we received consent to push it back a week to have the July 4th weekend as a family—one last breath before diving into the deep end.
There are two parts to my chemo plan:
• AC every other week for 4 rounds
• Then Taxol weekly for 12 weeks
AC is known for being tough. We’ve read about it, we’ve heard stories, but it still feels impossible to picture what it will actually be like—especially while raising two little boys. That’s where the fear creeps in. How do you explain to your kids why Mommy can’t chase them? Why she’s tired or sick or losing her hair? I don’t have the answers yet, I struggle with the lack of control and guilt that I can’t protect my kids from this heavy burden.
Hair Loss & Holding On
One of the hardest things for me to wrap my mind around is hair loss. It’s so visible—so immediate. It’s the alarm bell that tells the world, and especially my boys, that something is really really wrong.
There’s a cold capping machine available at an in network cancer center in Milwaukee. This might help preserve my hair or at least prevent permanent loss. But it’s expensive, and insurance doesn’t cover it. We weren’t sure we could manage the cost. Then—completely unprompted—some of our dearest friends came together to cover the first half. I still don’t have words for what this gift means to me. I carry that kindness with me every single day.
Cold capping adds 2–3 hours to each chemo session and involves literally freezing your scalp to protect the follicles. It’s a huge time commitment and physically intense. Patients often need medication just to tolerate it. All in, chemo days will be 6–7 hours long. But if it gives me a piece of myself back—if it helps soften this journey just a bit—it’s worth it.
I don’t know how I’ll feel once chemo begins. I don’t know how our family will adjust. But I know this: we’re not walking this alone.
God has shown up again and again—in the smallest mercies and the biggest miracles. In the generosity of friends. In a nap where I forgot, even for a moment, what I’ve been through. In the strength to keep going, even when I’m afraid.
There are days when I feel like I have nothing left, and that’s when I remember: I don’t have to carry this alone. I’m held. I’m carried. I’m sustained by a God who sees every tear, every scar, every whispered prayer.
“The Lord is close to the brokenhearted and saves those who are crushed in spirit.”
—Psalm 34:18
Even in this valley, I know He is with me. I may not understand the full picture, but I trust the One who holds it. My prayer is that through all of this—through every hard, holy, humbling moment—God would be glorified, and someone else would feel less alone in their own journey.
Thank you for walking alongside me. Thank you for praying when I can’t find the words. Thank you for holding space for all of it—the hope, the fear, the awkward details, and the beauty hidden in the cracks.
Prayer requests
- That Alex, the boys and I would have FUN together these next couple of weeks. But at the same time, not to stress about fitting in all the things.
- For my mental and emotional health. I’m doing ok, but feel talk therapy would be useful tool to process everything going on. I’m on the hunt for a new therapist!
- Continued healing and physical strength.
Keep those prayers coming,
Elly
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