Treating the Incurable

Ignorance is bliss. I used to take for granted how little I knew about cancer—about treatment options, drug approvals, survival rates. I miss that version of myself.

Now, my brain is in overdrive, trying to absorb everything, trying to understand. I came home one night, completely exasperated, and burst into tears telling Roger how much of this I just can’t comprehend. The surgeon handed us a binder, and I consumed every page in one sitting, only to realize that it barely scratched the surface of what I felt I needed to know. Every instinct told me to spend hours spiraling down the Google rabbit hole, but I resisted. There’s a reason doctors spend a decade plus getting an education before they’re trusted to guide patients through this. I try to remind myself that I don’t have to know everything.

Serenity prayer, anyone? God, grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference.

We turned to our village, gathering lists of questions to better understand as much as we can. And let me tell you—people have opinions. If I could offer any advice to someone supporting a loved one through this, it would be this: Maybe hold back on your opinion about treatment unless they ask… and even then, tread lightly. This is one of the most personal decisions a family will ever make. The only thing they truly need to hear is that you will support them through it.

The medical approach to treatment follows a “standard of care”—a rigid, clinical chart that dictates, if you have this, this, and this, you get this. And if you don’t check those boxes exactly, you get that.

There’s also the reality of drug approvals—like, “This drug is showing promising results for breast cancer, but the FDA hasn’t approved it yet for her specific type, so insurance won’t cover it.” Oh, and the cost? $18,000 per pill. Excuse me while I tell our healthcare system to go ahead and get fucked.

So, we go with the standard of care. Scientifically, I can accept that. But philosophically? It’s frustrating as hell. It’s like following a cookbook recipe with no option to adjust the ingredients, even if the dish doesn’t suit your taste—or in this case, your body.

Then, you’re hit with the numbers. The survival stats. The data. I understand why people want to know them, but when no one can tell us exactly how long this has been inside her, how do we even factor that into a prognosis? The numbers already feel irrelevant.

And yet, we’re forced to process statements like:

• No treatment will give you months, not years.

• Chemo alone will add a few more months.

• Chemo + immunotherapy could add a little more on top of that.
  

And then you weigh all of that against quality of life.

I was appalled (that’s putting it lightly) when a medical professional said to us:

"Given her disability, are you sure you want to put her through treatment? We don’t know how her body will respond."

I have raged over those words. I have sat with them longer than I care to admit.

What were they saying? Because, you'll never know how anyone's body will respond to treatment. Was this conversation different because of her disability? Do they not value her life the same way they would if she were a typical patient? That can’t be it. Maybe they know something I don’t. Maybe they’re biased by years of watching patients fight battles they ultimately couldn’t win. Maybe philosophically, they prioritize quality of life over all else. I certainly can understand that.

But I cannot accept that Kara’s life is worth any less consideration than anyone else’s.

I don’t feel like I owe anyone an explanation, but I also know that sharing our thought process might help someone else facing this same impossible decision.

Kara’s diagnosis and the standard of care haven’t offered much hope. It has been devastating. We talked through different options at Mayo Clinic, weighed all the potential side effects of chemo drugs, and tried to wrap our minds around what all of this means for her future.

And when we put all of that against the value of her precious, irreplaceable life, we couldn’t imagine just letting the cancer win without a fight.

Yes, chemo is scary. Yes, there are risks. But nothing about the alternative felt right.

We landed on a treatment plan that balances effectiveness with kindness to her body. She’ll start with Gemzar, Carboplatin, and an immunotherapy drug called Keytruda. She’ll get all three drugs tomorrow, then just chemo next week, followed by a week off.

We’ll monitor, adjust, and reassess as needed.

Kara’s quality of life is our priority. But so is fighting for her—because her life matters, and cancer doesn’t just get to take it without a battle.

Statistics are just numbers. People beat the odds every day. And we will persist.

Tomorrow, we really start the battle.

We’ll be sporting our Team Kara shirts, and it's positive vibes only. We’d love it if you kept her in your prayers—for strength, for healing, and for a miracle. 💛