Hey babe, it's Kyra!

Hey babes 💕

Monday and Tuesday’s transplant evaluation testing actually went really well and overall felt pretty positive. I met a lot of new members of my care team including a transplant coordinator, nutritionist, social worker, hepatology oncologist, and of course, the transplant surgeon himself.

I passed all my initial physical testing with flying colors! During the frailty test, they measured my arm and grip strength with a dynamometer — and I consistently scored 41 kg, which is considered excellent for my age (for reference, the average in your 20s is around 27–35 kg). My cardiac tests were also great: my EKG was perfect, and my echo showed a resting heart rate of 69 bpm, which is my new flex and I am pretty proud of! I do be in the gym, so it’s nice to see it paying off in more ways than just what you can see physically ✨

The biggest updates came from our meeting with the transplant surgeon. Up until now, we thought this process was going to move quickly — we were thinking transplant by the end of the year. But after talking through everything with both the surgeon and hepatology oncologist, it looks like I’ll need to do 3–6 months of chemotherapy before considering surgery.

Basically, my body needs to respond really well to chemo before they can safely move forward. If they rush into surgery and there’s still active cancer left behind, it becomes extremely dangerous. After a transplant, I’ll have to be on medication that suppresses my immune system for the rest of my life — meaning my body wouldn’t be able to fight off any remaining cancer cells. The surgeon literally said if there is any cancer leftover and my immune system is lowered, “It would spread like wildfire”, and get everywhere. So the goal is to make sure chemo has things fully under control first.

So right now, transplant is still the goal, but everything depends on how chemo goes. The tricky part is that while we’re doing chemo, if the cancer spreads anywhere outside my liver and bile duct, I’ll no longer be eligible for transplant. It’s a very delicate balance, and they’ve said multiple times that I’m a special case. There’s not a lot of by the book protocol for someone with both cholangiocarcinoma and PSC, so a lot of this comes down to trusting my doctors to be diligent, creative, and relentless in finding the best path forward to (hopefully!) save my life and give me a life after all of this.

It’s been hard to shift my mindset because this whole time we’ve been focused on transplant, transplant, transplant. Now, mentally pausing and realizing the focus is actually on getting through chemo first has been tough. Honestly, I’ve been more afraid of the idea of chemo than a huge, invasive liver transplant.

Even when it comes to physical scars — I’ve been dreading getting a mediport implanted in my chest. It’s a small procedure and a tiny scar compared to the full incision down the middle of my stomach I’d have from a transplant, but for some reason, this one feels heavier. It’ll be visible to me every day, a constant reminder of what’s happening — and I hate that. I’m still young, and I frankly I love chest and collarbones — It’s one of my favorite parts of my look. The thought of a scar right there makes me nervous. I’ve talked with multiple people in my life who’ve had a mediport, and everyone says it’s nothing, super easy, and not a big deal… but I’m just not there yet. I know once it’s in, it’s all going to feel real.

Right now, I still feel totally normal — no symptoms, no pain — and that’s something I am holding onto so tightly. I know that when I get my mediport in and start chemo, everything is going to feel so real. Big changes are coming whether I’m ready or not.

I’m getting my mediport put in today (10/10) at 9 a.m., and my first round of chemo will start next Wednesday (10/15).

I also decided to move forward with scalp cooling to help preserve my hair and prevent hair loss. The chemo I’ll be on usually doesn’t cause complete hair loss, but it can cause extreme thinning. I debated skipping it since it’s expensive, but after talking to friends (and thinking back to before I was diagnosed with anything, and I was experiencing symptoms I didn’t even realize where symptoms of extreme blood loss), I remembered how traumatic it was losing so much hair from my hair. My hair was literally falling out in clumps/by the hand full in the shower. I still visually had a full head of hair, but it was sooo thin. I looked decent from afar, but my curls were so thin and stringy — it took years to grow them back to where they are now.

So after thinking it through, I realized: my curls are such a big part of me, and I want to do everything I can to protect them. My friends said, “If it’ll make you feel even a little more confident through this, do it.” And they’re right. So… Operation: Save the Curls is officially underway!

I created a GoFundMe page where you can donate directly to help cover the cost of my scalp-cooling treatment! The treatment is through Cooler Heads, and the total cost of $2,165 covers all cycles of chemo, no matter how many I’ll need. You can read more about scalp cooling on this page, and donate to my curls below — any amount helps me feel more like me through this whole saga.💖

GoFundMe- Operation: Save The Curls

My next update will cover how the port installation goes and what I learn during my chemo class as I prep for my first round next week.

Thank you for following along and helping this hot girl stay looking — and feeling — HOT. Love you tons!🫶🏽

xoxo,

Kyra💋✨